Post AmE8WEWc9FbAVsV9ou by Huubje@ieji.de
(DIR) More posts by Huubje@ieji.de
(DIR) Post #AlbSCPMuXkaAGpLkcC by ErikUden@mastodon.de
2024-09-02T19:51:46Z
1 likes, 1 repeats
Tomorrow I will begin my participation in a medical study for the coming 19 days, testing a compound meant to treat multiple sklerosis. The specific compound name is RO7268489, which has been tested on 67 people in four previous studies as of yet. Both the FDA and the EMA have not approved this compound for a treatment. Multiple sklerosis (MS) is caused when a protective coating on nerve cells (called myelin) is damaged in the central nervous system. A majority of approved drugs for the treatment of MS only influence the immune system in a way that relapse rates are reduced. The compound I am testing targets mechanisms in the brain responsible for worsening the disability, hence improving neurological functions. My study is the fifth of this kind, ever, and is conducted in Groningen (Netherlands) by the ICON plc, a private healthcare intelligence and clinical research organization trading at the Nasdaq. The specific code for the study I'm participating in is PRA-RPUBIU40-0H13WG. This compound is well tolerated in doses below 2mg, and due to unwanted side effects¹, the medical company sponsoring this study has decided to only continue testing below that dosis. Before this, it was tested until 6mg. This part of the study is a “Multiple Ascending Dose” study, meaning it's supposed to evaluate safety and tolerability of the compound on the human body, as well as how quickly it gets digested, or how the human body generally responds to it (pharmacokinetics). Three groups of the compound are tested, each divided in two subgroups, one of which truly takes the compound, the other gets the placebo. Group 1 gets 0.2mg of the compound Group 2 gets 0.6mg of the compoundGroup 3 gets 1.0mg of the compound I am part of group 2 (b), which has 6 subjects taking the real drug, and two taking a placebo, meaning there's a 25% chance I'm simply drinking a glass of water for three weeks. The research facility aims to also see the effects of the compound in the body (pharmacodynamics). In order to do so, they will take cerebrospinal fluid samples through a lumbar puncture three times throughout the study. If anything happens to me in the coming four years as a result of the effects of this compound or study, I have an insurance of 650,000 € (same amount is paid out to my family in the case of me dying). Whatever I'll experience throughout the coming weeks is what multiple sklerosis patients will have to listen to as disclaimers whenever they'll take this medicine once it's approved. I'll document everything I experience, both side effects and my overall thoughts, in this thread. That is for both my own sake, and maybe to document a piece of medical history, if it ever comes that far. Additionally, this may not be something you hear of a lot, hence I wanted to put it out there. If you have any questions, I'll be happy to answer them!¹ Side effects include: anxiety attacks & increased heart rate, hyperventilation, motor unsteadiness, severe paranoia, trouble speaking, trouble completing sentences, trouble verbalizing thoughts and a feeling of loss of control (which lasted 3-5 days until full recovery), increased suicidal tendencies
(DIR) Post #AlbSRypeyLxsbRDptw by alberto@mastodon.la
2024-09-02T19:54:34Z
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@ErikUden good luck
(DIR) Post #AlbSZPCbKNdiPnUeWW by cykonot@mas.to
2024-09-02T19:55:56Z
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@ErikUden Good Luck and God Speed!Here is a related post I made the other day:https://mas.to/@cykonot/113030513281723389
(DIR) Post #AlbScioyqD9A8C1hJ2 by wjmalik@noc.social
2024-09-02T19:56:30Z
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@ErikUden good luck. You are brave.
(DIR) Post #AlbSsvu1yLL9Kt7QCu by eniko@peoplemaking.games
2024-09-02T19:59:26Z
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@ErikUden how did the prospect of three lumbar punctures not scare you off?
(DIR) Post #AlbTSt0qCADinURpmi by catsche@nrw.social
2024-09-02T20:05:57Z
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@ErikUden Auch im Namen meiner Mutter, die bis zu ihrem Tod (aus anderen Ursachen) fast 30 Jahre lang mit MS in Schüben gelebt hat, bedanke ich mich für deinen Einsatz. Alles Gute wünsche ich dir für die kommenden Wochen und wünsche mir für alle Betroffenen, dass der Wirkstoff den erhofften Erfolg hat.
(DIR) Post #AlbTUPfsFEtcNyMvnE by CharJTF@a11y.info
2024-09-02T20:06:14Z
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@ErikUden As someone with weird diseases (and a cousin with MS), thank you, thank you, thank you. I hope you get the real thing and that it helps.I'll be bookmarking your post so I see your future updates.PS I cringed originally when I saw "lumbar puncture" and then realized that most of my tests involve needles (kidney and lung). You got this 💜
(DIR) Post #AlbTlYb0KPcIyhGYHg by Hugo_h@troet.cafe
2024-09-02T20:09:19Z
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@ErikUden Ich drücke dir die Daumen, dass du möglichst wenig Nebenwirkungen erdulden musst ... in Gedanken bin ich bei dir!
(DIR) Post #AlbULOg8g3zue4l1mK by _maleficentgirl@troet.cafe
2024-09-02T20:15:48Z
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@ErikUden Bei den Effekten frage ich mich immer: wie viel davon ist wirklich von den Medis und wie viel entsteht "im Kopf" des Probanden alleine aufgrund des "wissens" das da was neues/ungewohntes in den Körper kommt (kommen kann).Und ich denke nicht das die Placebo-Kontrollanten das komplett herausfiltern weil jeder anders im Kopf gestrickt ist und andere Reaktionen erzeugt/provoziert somit kann man nicht 1zu1 sagen "ah das Symptom hatte einer der P-Probanden, das können wir abziehen"
(DIR) Post #AlbUdKxdEsimKLUhQe by GEDANKENTaenze@troet.cafe
2024-09-02T20:19:01Z
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@ErikUden Alles Gute. Du bist sehr mutig.Ich hatte einen Cousin, der vor vielen an MS starb.
(DIR) Post #AlbUeAKmEaXRetiP5M by eigentlich@mastodon.social
2024-09-02T20:19:12Z
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@ErikUden alles gute
(DIR) Post #AlbUzCe0q8jsuAkB6m by BioSchweiz@troet.cafe
2024-09-02T20:22:59Z
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@ErikUden all the best to you, it’s such an awful disease striking the young.
(DIR) Post #AlbVDgpPPjQmZYyxXs by nshr@hhsocial.de
2024-09-02T20:25:36Z
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@ErikUden Hope that this will be side effect free for you and generally not too harmful. You're in my prayer man.
(DIR) Post #AlbVUxOV4jHAsFd5nM by radlpit@troet.cafe
2024-09-02T20:28:44Z
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@ErikUden 🤞 Ich wünsche dir Glück! Alles Gute!
(DIR) Post #AlbVdiAR3dfOFsE1lA by stefan@stefanbohacek.online
2024-09-02T20:30:18Z
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@ErikUden Oh wow, this is all very brave of you, wishing you best of luck!
(DIR) Post #AlbYhKg8d6EeQXTLJg by Ostfriesin@mastodon.social
2024-09-02T21:04:35Z
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@ErikUden That is a very brave thing to do for research! 🥰All the best to you, Eric!!!!
(DIR) Post #AlbZMvL3EYlRzyRQ0G by waxle@mastodon.social
2024-09-02T21:12:06Z
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@ErikUden That’s both incredibly brave and incredibly selfless of you. Good luck!
(DIR) Post #Alba8b61nV9P7O99yy by waiting@pnw.zone
2024-09-02T21:20:41Z
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@ErikUden Good luck, fellow traveler. This damn disease attacks the core selfhood of people. You are a valorous one indeed. May the side effects of treatment be mild and brief for you.
(DIR) Post #AlbbTHiZ8nkz3JbJia by 33dBm@lazysocial.de
2024-09-02T21:35:38Z
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@ErikUdenAll the best!
(DIR) Post #AlbvIoD7zUjfj2B6jQ by deirdrebeth@mas.to
2024-09-03T01:17:51Z
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@ErikUden This is fabulous. I hope you're not just drinking water and the side effects are minimal! My friend who had MS went to Mexico for the chemo treatment and rebuild of her entire immune system. It totally worked, but it doesn't fix old damage, and WOW is the risk high.
(DIR) Post #AlcBQ8XyNVlk5gRc9I by ErikUden@mastodon.de
2024-09-03T04:18:28Z
1 likes, 0 repeats
I have just left my house and will begin the drive to Groningen via public transport shortly.
(DIR) Post #AlcBrQ07ao322fcTIG by peppe@fosstodon.org
2024-09-03T04:23:25Z
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@ErikUden Being originally from Amsterdam, we consider any travel to Groningen to be challenging 😎
(DIR) Post #AlcCFrjC9jHyzBMMNs by Alicia_gay@union.place
2024-09-03T04:27:49Z
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@ErikUden Good luck!!!
(DIR) Post #AlcFeHDNLdXcqOoA1g by virgil_tibbs@norden.social
2024-09-03T05:05:49Z
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@ErikUden da war ich doch grad 🙂 ist fahrrad nciht die wahl bei der kleinen stadt?
(DIR) Post #AlcFlZLUKubL6S51QO by ErikUden@mastodon.de
2024-09-03T05:07:10Z
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@virgil_tibbs von Hannover aus fahre Ich lieber mit der Bahn! 307km mit dem Fahrrad? An einem Dienstagmorgen??
(DIR) Post #AlcG4KsgL7BfkBYS80 by virgil_tibbs@norden.social
2024-09-03T05:10:33Z
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@ErikUden ah! "to", not "in" :-)
(DIR) Post #AlcG9bz2BFZAEa2dvc by ErikUden@mastodon.de
2024-09-03T05:11:31Z
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@virgil_tibbs Hahahaha, das macht einen Unterschied! :blobcatmeltlove: :blobcatgooglyholdingitsheadinitshands:
(DIR) Post #AlcHvhhgJfZjpSQAZE by virgil_tibbs@norden.social
2024-09-03T05:31:24Z
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@ErikUden aber nach Groningen war auch die Hölle mit den Öffis.Jdenfalls von HAmburg aus.Da fährt dann nämlich keine Bahn durch, sondern man muß in Leer umsteigen in den Bus. KOmplett absurd.
(DIR) Post #AlcIP2IOplAc5naACW by ErikUden@mastodon.de
2024-09-03T05:36:44Z
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Picture of my last meal before the study. Starting 4 hours before my screening at arrival (12:00), I am not allowed to eat anything, nor drink sugary / caffeine based beverages. For other studies it's sometimes 8 hours or more, so this is pretty mild and I can even have a breakfast the same day.Since 6 months I was not allowed to do weed.Since 2 weeks I am not allowed to eat poppy seeds.Since 48 hours I am not allowed to drink alcoholIn 24 minutes I am no longer allowed to eat anything.My fast begins soon. I wish a nice breakfast to everyone!
(DIR) Post #AlcIvs6ljRce3Jncjw by Josteglitz@troet.cafe
2024-09-03T05:42:38Z
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@ErikUden what exactly are you doung? 🤔
(DIR) Post #AlcIz74wWoanLrUVIe by holger@mastodon.de
2024-09-03T05:43:15Z
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@ErikUden good luck!
(DIR) Post #AlcJNZLL5qULxip0KW by cykonot@mas.to
2024-09-03T05:47:40Z
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@ErikUden can't stream "This Is Spinal Tap" online 😔I never watched it before, but I would if I volunteered for the kind of study you're participating inQuite the sensation (read in the voice of your favorite cenobite)
(DIR) Post #AlcLYj6tJuBHLcVnFI by Lizzz@infosec.exchange
2024-09-03T06:12:05Z
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@ErikUden Thank you.
(DIR) Post #AlcLraNI1Sthl0AtbU by TheDonsieLass@mas.to
2024-09-03T06:15:29Z
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@ErikUden Good luck. You're doing such important work
(DIR) Post #AlcN2Nod9nJTwgfxHU by liberloebi@digitalcourage.social
2024-09-03T06:28:38Z
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@ErikUden All the best to you!
(DIR) Post #AlcRRT3xBWfrH93lHE by ErikUden@mastodon.de
2024-09-03T07:18:01Z
1 likes, 0 repeats
Ja... Das ist warum Ich hier (in Leer) bin.
(DIR) Post #AlcRWzwiLxgii1JK76 by cody@catboy.baby
2024-09-03T07:19:02.569Z
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@ErikUden@mastodon.de This does not sound very good in English:kekw:
(DIR) Post #AlcRhXQkiIiVSHO25o by virgil_tibbs@norden.social
2024-09-03T07:20:55Z
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@ErikUden ah, ich hätte gedacht, ab Hannover fährt man dann eher über Osnabrück.
(DIR) Post #AlcRpPdNaGmJal30We by hpower@mastodon.social
2024-09-03T07:22:19Z
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@ErikUden Ich bin immer in Dienst😎
(DIR) Post #AlcS1IK2ayDoOCfTCi by ErikUden@mastodon.de
2024-09-03T07:24:28Z
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@virgil_tibbs Das stimmt! Jedoch habe Ich eine BahnCard 100, deswegen versuche Ich so wenig Strecke im Ausland zu vermeiden. Selbst wenn Ich das Ticket aus Leer kaufe, wird mir die Hälfte der Strecke erspart, Ich bezahle also maximal 10€ für den gesamten Weg.Ansonsten ist der andere Weg manchmal schlauer, Ich traue aber einfach Google Maps / der DB App und die zeigt mir den schnellsten Weg hier an!
(DIR) Post #AlcS7gSZlULSzLhsUC by virgil_tibbs@norden.social
2024-09-03T07:25:38Z
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@ErikUden versteh ich. mich hat es genervt, daß ich das Rad nciht mitnehmen kann, weil NL-DE zu doof sind über den Bach eine Brücke zu bauen für die Bahn.
(DIR) Post #AlcS8hmyJF5rOqjYWW by ErikUden@mastodon.de
2024-09-03T07:25:50Z
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@cody the joke is that the word “Leer” is both the name of this city and the word for “Empty”. So this bus isn't stopping, it's saying “we're driving empty”. However, since I'm in empty, I'm saying that that's why I am here.
(DIR) Post #AlcSINpXMzegOYY4p6 by cody@catboy.baby
2024-09-03T07:27:36.860Z
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@ErikUden@mastodon.de Lmao so it's not just a fart joke :kekw:
(DIR) Post #AlcT1qnCXFmrFe8W3c by PaulMeyn@troet.cafe
2024-09-03T07:35:46Z
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@ErikUden 😂 😂 👍
(DIR) Post #AlcUGgC2KGkCfxO6XQ by TyrionTargaryen@social.vivaldi.net
2024-09-03T07:49:39Z
1 likes, 0 repeats
@ErikUden @cody I thought it had to do with "farts".
(DIR) Post #AlcUPuwwpY8p35je4W by ErikUden@mastodon.de
2024-09-03T07:51:21Z
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@TyrionTargaryen @cody that just means “drive” in German :]
(DIR) Post #AlcUZwht9Vg1OVTOxE by ErikUden@mastodon.de
2024-09-03T07:53:09Z
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@virgil_tibbs Das mit der Brücke ist mein persönliches Eklat. Mein Leben wäre sehr viel besser gäbe es diese Brücke.
(DIR) Post #AlcUaZJRcKIT7zKvlg by virgil_tibbs@norden.social
2024-09-03T07:30:23Z
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@ErikUden
(DIR) Post #AlcUaa74dnznbuYZ7o by ErikUden@mastodon.de
2024-09-03T07:53:15Z
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@virgil_tibbs Wiener haha
(DIR) Post #AlcUcn1paoCmFK9oTQ by ErikUden@mastodon.de
2024-09-03T07:53:41Z
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@virgil_tibbs Aber ja, ein fucking Bach. Eine Bach Brücke. Bitte Europa :(
(DIR) Post #AlcUmbxdb3hwofsYzI by ErikUden@mastodon.de
2024-09-03T07:55:22Z
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@gabriel Huh. Good question! I'll certainly scan the study documents and post them soon, I'll have way too much time on my hands otherwise.They don't share too much information about how it works, because the information sheets about what it may do and what risks come with it are already 100+ pages. Additionally, this might just be a completely internal name.https://www.iconclinicaltrials.com/trials/pra-rpubiu40-0h1w3g#research-groupsThis is the exact study I'm participating in!
(DIR) Post #AlcVe60ScQH7LghdlQ by wauz@mastodon.de
2024-09-03T08:05:06Z
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@ErikUdenIn Aurich ist es traurich...
(DIR) Post #AlcWIPi8mF4q2pMJIO by ErikUden@mastodon.de
2024-09-03T08:12:24Z
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@wauz Im Norden geht man Morden (Klaus-Peter Wolf)
(DIR) Post #AlcWXj5L1iVoTaVjhw by ErikUden@mastodon.de
2024-09-03T08:15:07Z
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@gabriel it sounds like you know a lot about this! I sadly can't say the same about myself. I'll share as much information as I'm allowed to online (and more ;) and hope your questions will be answered in the coming days! Both pharmacokinetics and pharmacodynamics is being studied!
(DIR) Post #AlcX6VPPrld8CCUDKa by wauz@mastodon.de
2024-09-03T08:21:27Z
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@ErikUdenMoordorf!
(DIR) Post #Alcb9xhtVjiSe726ZE by ErikUden@mastodon.de
2024-09-03T09:06:54Z
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@virgil_tibbs Ich liebe den Bus, auch wenn Ich es eine Schande finde, dass es so lange baut diese kleine Brücke über den noch kleineren Schlot zu bauen.
(DIR) Post #AlcpAItk7bCHj9dFz6 by tetrapyloctomist@muenchen.social
2024-09-03T11:43:48Z
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@ErikUden Danke, dass Du da mitmachst :mastolove: - und alles erdenklich Gute* für die nächsten Wochen🤞* das schließt eindeutig auch knackige Pfirsiche mit ein, sofern Dir gerade danach sein sollte :mastogrin:
(DIR) Post #Aldae6xJmbs1Dp1H84 by ErikUden@mastodon.de
2024-09-03T20:35:51Z
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Day 001 of the Multiple Sklerosis Study(Day -3) Tuesday on 2024-09-03 GMT+1Groningen, NetherlandsI just arrived at the ICON medical research center in Groningen today at around 11:00 AM! As I was an hour too early, I expected to wait longer, however, the staff was very glad about someone arriving early, as not only was I the first to arrive, but also could they prepare all the things for me that later might take longer due to having to do it for more people. At around 11:26 I was given a wristband that can identify me. It shows my name (Erik Uden), PRA Number (0H1W3G), group (1-2b1), and my V number (0056). After that I was shown around, shown my room, shown the beautiful and fun recreation rooms (we have like three separate living rooms with fusball / kicker tables, dart boards, TVs with Netflix etc. on them, and much more). My blood was taken for three samples, my weight measured, a urine sample was taken too. My mental and physical wellbeing was checked.At 12:02 I was given a schedule for the coming three weeks, and an emergency wristband was put onto my other arm. I can press it which will alert staff, and if I take it off staff is alerted. So I have to wear it during shower etc. My schedule for today12:00 Subject check in Urine clinical chemistryBody weight Blood libal chemistry WellbeingStudy briefing 12:30 Lunch 14:00 Physician task Physical examination (abbreviated) Neurological examinationBrief Psychiatric Rating ScaleCannabis Withdrawal ScaleC-SSRS 15:30 Afternoon snack17:00 Wellbeing18:30 Dinner21:00 Evening snackI still didn't have the study briefing. I was told it'd gonna happen ~15:30 and was rescheduled.At around 12:12 I was already done with everything due to being so early, hence I could already go and eat lunch. I did not understand that the Dutch have their main meal in the evening, hence I was a bit disappointed at first. Although the food offered is more than enough, it didn't seem like a full meal. Later, however, I was allowed to choose my dinner for the coming weeks, then I realized when the Dutch have their heavy course.I had tomato soup, three slices of bread (with cheese, hummus, tomatoes, cucumbers, de ruijter sprinkles, and abrikoos/bosbes fruitbeleg as topping). I drank roiboos tea and milk. There was no limit on how much you could eat, I could've eaten more, but wasn't too hungry. They also have a machine similar to that in Subway to make toast even with cheese etc. on it. That was pretty cool. During lunch I recall a man loudly proclaiming “spaghetti!” upon seeing the tomato soup. We did not have spaghetti. He did not seem disappointed, however. I was told that the breakfast is fairly similar with the difference being that you also get Yoghurt.Around 12:40 I was done with lunch and called my family to inform them that I'm fine and all is going well.After around 8 minutes, however, I had to abruptly end that conversation in order to participate in a tour of the whole facility, or rather the spaces we're allowed to walk in. I can go in one large circle and don't just have to stay in my part of the clinic. I can even go onto a balcony and breathe fresh air, sometimes there are (guided) tours outside. What is very clear, though, is that we are not allowed to go outside on our own for the entirety of the study. I can have visitors, but for the next 19 days I have to remain on this clinic, hence the many recreation rooms.I had my physical examination exactly at 14:00. Everything was fine.Stats of todayWater intake: 3 (glasses)I've been given the study briefing at 15:12 and a ton of information I'd wish to share. Most importantly that my first lumbar puncture is tomorrow Morning 08:00 AM, and that there is no reserve for this group, so unless we drop out or our blood tests yield bad results, we're all going for this ride.Regardless, it's 22:35 as I'm writing this. I'm going to bed!
(DIR) Post #Aldb4dhEg1R6IJ99we by ErikUden@mastodon.de
2024-09-03T20:40:39Z
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Also to note: my perception of time is completely gone. I feel like I've been here for days already, I just arrived this morning. I did not take any of the compound yet. This is just a general vibe I have in such facilities.
(DIR) Post #AldbR16MKyfDFsZJAW by TurbodemokratHB@hessen.social
2024-09-03T20:44:41Z
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@ErikUden Vielen Dank für den Einblick, das ist sehr informativ.Ich wünsche dir alles gute und eine schöne Zeit im wunderschönen Groningen.Das Museum ist übrigens sehr zu empfehlen, unabhängig was für ne Ausstellung da ist.
(DIR) Post #AldcZCcNVGZ1FA0oe8 by cb1@chaos.social
2024-09-03T20:57:22Z
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@ErikUden just in case you didn't know already. Right after the LP...stay in bed, stay horizontal, don't move. Even if you think the headache is not that bad, stay lying for an hour or two 😄 Some say coffee helps with the headache, can't confirm. Thank you for participating!
(DIR) Post #AldcrN65HTNKxMZRHE by CStamp@mastodon.social
2024-09-03T21:00:38Z
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@ErikUden Good luck.
(DIR) Post #AldeL5rs0G7aA8etAu by miskaknapek@vis.social
2024-09-03T21:17:12Z
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@ErikUden lots of luck Erik! welldone.greetings from a mecfs representative ;)
(DIR) Post #AldrKRimZ9ZZ3QQgJE by JanetGrBr@mastodon.social
2024-09-03T23:42:46Z
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@ErikUden Are there also women participating in the study, so the medication will be save and working for women too?
(DIR) Post #AldvNauXFtzQEygQvQ by obtener@mastodon.world
2024-09-04T00:28:08Z
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@ErikUden Best wishes for a positive outcome.
(DIR) Post #AleJ0ga4PGmU45iiDw by ErikUden@mastodon.de
2024-09-04T04:52:57Z
1 likes, 0 repeats
Images of Day 001 (-3) of the Multiple Sklerosis Study!
(DIR) Post #AleNzIZyepnL6gpoXo by Minnasophie@troet.cafe
2024-09-04T05:48:43Z
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@ErikUden alles Gute für dich! ✊🏻 Hoffentlich gute Erkenntnisse. 🍀
(DIR) Post #AleQ9awtPlHwspagCW by liberloebi@digitalcourage.social
2024-09-04T06:12:59Z
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@ErikUden 'Gemütlich'
(DIR) Post #AleTcgsOkri9Wm3OhE by CannaParts@nrw.social
2024-09-04T06:51:51Z
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@ErikUden Ui...😪 Alles nur erdenklich Gute für Dich...🙏 🤗
(DIR) Post #AleXM5lNNBpXbe6s76 by ErikUden@mastodon.de
2024-09-04T07:33:41Z
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THERE IS A DOCTOR IN MY SPINE, THIS IS A SPINE TWEET
(DIR) Post #AleY8Icsqs35Os7nM0 by Pentropy@lazysocial.de
2024-09-04T07:42:22Z
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@ErikUden tweet? 😂
(DIR) Post #AleYH3ifdyJpm40aGG by Handtuch42@troet.cafe
2024-09-04T07:43:54Z
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@ErikUden
(DIR) Post #AleYqWrZHT2kIS5EvY by tron@troet.cafe
2024-09-04T07:50:20Z
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@ErikUden Confused German followers incoming.
(DIR) Post #AleZg5a3xddsjxTtzs by _maleficentgirl@troet.cafe
2024-09-04T07:59:42Z
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@ErikUden Die uhr ist was für ✂️ an den Kabeln
(DIR) Post #AlecdkRbsFpwTE6REW by ErikUden@mastodon.de
2024-09-04T08:32:52Z
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@tron LOL WAS
(DIR) Post #AlecfzLjQaj5HFQCrw by ErikUden@mastodon.de
2024-09-04T08:33:19Z
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So... the anesthesia didn't wear off as quickly as they said... Please enjoy this post as much as I'm doing it right now
(DIR) Post #AlehnP6GaNrowHXk24 by TurbodemokratHB@hessen.social
2024-09-04T09:30:37Z
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@ErikUden
(DIR) Post #Alen6Y7bldQGBy7SpE by ErikUden@mastodon.de
2024-09-04T10:30:09Z
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Day 002 of the Multiple Sklerosis Study(Compound Day -2) Tuesday on 2024-09-03Groningen, Netherlands (GMT+1)My Schedule for TodayComment: Pre dose CSF sampling07:15 ECG3x mesasurements after 10 minutes in supirie position07:15 Vital signsBP, HR, T (3x measurements)07:15 Intravenous catheterInsert (not for reserve volunteers)07:30 Wellbeing08:05 Blood samplingPL PD 2-AG: Sample 101 Expl BM: Sample 201SR PD 2-AG: Sample 30108:05 Transfer bloodtubesPD CSF: Sample 501 Collection 108:10 CSF samplingPD CSF: Sample 101Collection 18:10 Transfer CSF tubes08:10 SupervisionStart category 2 for CSF sampling09:10 SupervisionStop category 2 for CSD sampling (1 hour after the CSF sampling of the last subject) 09:25 Breakfast13:00 Lunch14:00 DischargeOnly reserve volunteers Time may differ 15:00 Intravenous catheterCheck 15:30 Afternoon snack16:10 Cogstate Neurocognitive Test Battery training 19:00 Wellbeing19:30 Dinner21:30 Evening snack22:00 Intravenous catheterCheckMy Stats for TodayWater intake: 2 (glasses, one of which was tea) Notes of Today06:30Was woken up by assistants and doctors wanting to put ECG stickers on me. Afterwards I was left alone, and thought I had a bit of time left, so I didn't go to the bathroom right away. 07:05 I thought I still had 10 minutes left, as my first appointment for the ECG was in 10 minutes, however, for a good ECG you need to begin resting 10 minutes prior. So I was told to lie down and wait.07:15 This was my first appointment of the day, the ECG went well. I was lying still for 5 minutes and then a blood pressure check, as well as a different test would be performed. 07:30Around this time the ECG testing must've been over, so I went to the bathroom and came back. Today was not a day where urine would be sampled, so I could go to the bathroom normally. The bathrooms would be locked on such days, so you had to get a key from the “urine station”. Although annoying, I know sure as hell that I'd forget without such measures. After coming back we deviated from the schedule a bit. I guess me questioning so many things the day prior made them worry I'd leave the study if I don't get answers. I was walked into an office with the head physician and also “mastermind” of this study. I was generally interested in how the medicine worked, as the study paper us participants got only talked about side effects, the procedure, and legal stuff. The doctor was very interested in explaining every minute detail, although he had to often repeat things in layman's terms for me. The way I understood it is that the compound we are testing builds an extra coating on the cannabinoid receptors of the central nervous system. They also have something to do with Cannabis, although I have zero idea what they do in regular day to day life. This coating gets destroyed for multiple sklerosis patients, which this drug it could be rebuild. For us, it could potentially build another coating, making the receptors far more sensitive to cannabis. He told me if we were to take cannabis during this study, we would feel the effects 100 times. This explains why many of the side effects on higher doses are similar to that of weed (panic attacks, etc.) It also explains why we had a specific questionnaire regarding weed and how badly we want it. He also told me that weed would have the exact same effect as usually after the 15th of November, the day the study is completely over. [To Be Continued...]
(DIR) Post #AlenKWROoTod282Uu8 by ErikUden@mastodon.de
2024-09-04T10:32:41Z
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07:30 (Continuation) I will inquire more about this compound and how it works soon, but this explanation sufficed for me. Additionally, I was questioned about some of the things I responded in the “wellbeing” section. I had a bad day at work the day prior, so when asked if I was erratic or angry in the past 24 hours (so two days ago), I truthfully responded accordingly. He simply told me that in the future it'd be helpful to give that explanation, otherwise they assume something is wrong with the study, or the doctors are at fault. This is completely fine, I was told. He also told me that this was quite an intense study, 19 days and sometimes 30 or more appointments a day with specific requirements. The reason they're checking so much on our wellbeing is to see whether we're up for that task. I said I am very much feeling up for it. After the meeting we went right to the wellbeing for this morning, which ended in less than a minute as I was ecstatic and excited to begin the study today! I came back, my bed was already moved to a different room. The Blohaj I had taken to the hospital was resting on a separate pillow on the stand in front of the bed where they always put documents of the patients. I was told to sit down as they explained the procedure of a lumbar puncture to me... 08:10 (written in hindsight)The lumbar puncture to do the CSF sample started a bit later than planned, I don't have the exact time in my head. Everything went as planned, other than the fact they still needed to do a cannula as they've forgotten to do so prior. The rather new and inexperienced acting assistants made the intravenous catheter in my right arm, and then took three blood samples. Right afterwards the explanations about a lumbar puncture began. The biggest side effect / danger of this procedure was my own emotions and worry, I was told. The doctor performing the CSF sampling entered the room. I've seen him before, he was the same do doing my screening about a month ago. He explained everything to me, the posture I needed to be in, why both my blood pressure and other things needs to be live monitored, etc. Apparently they want to know whether I'm about to faint. Probably important if there's a needle in my back. They told me the local anesthesia would be 10 centimeters behind the spine. The idea of a 10 centimeter long metal spike going into my body was scary, but when they showed me how thin it was, I felt a lot better. It was thinner than a hair. The doctor also said that I was the first (of thirty) patients he'd be performing a lumbar puncture on today, and to ease my fear he said that he'd always be the most awake and aware for the first one. He probably says to patients further down the list that he's already well trained and adjusted due to the former procedures. Anyway, it calmed my nerves a lot. Another interesting piece of lumbar puncture trivia I overheard even during my screening was that if you talk during the procedure the spinal fluid comes out faster. A lumbar puncture isn't a needle extracting a fluid, it's punctuating a small hole in your spine and waiting for a droplet to come out. The vibrations of a patient speaking pushes this droplet out faster. They would collect 5 of these droplets from me, the human body can regenerate about 30 in a day, I was told.At this point there were 8 people in the room all running around preparing everything. [To Be Continued...]
(DIR) Post #AlenS0wdnaVTfOE01I by ErikUden@mastodon.de
2024-09-04T10:34:02Z
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08:10 (Continuation)I was moving into the position, I was scared and shivering, even. I have to sit on the side of the hospital bed, my back bent in order to expose as much area of my lower upper back. In order to rest my head and not keep this position, they gave me a pillow to rest on. The issue was that I would then talk into the pillow and could not see the doctor in front of me to talk to. I suggested the same glasses as in an MRI in order to look at the doctor / anything during the procedure. In order to distract myself I began talking about Mastodon and the Fediverse as they told me they will begin with the anesthesia. A doctor / assistant in the room opened the app store some time during the procedure and even downloaded Mastodon as I would not stop talking about it. They cleaned the “workspace” (my back) more than would be necessary in a hospital, they told me, as they wrapped a sterile plastic bandaid (?) from shoulder to shoulder.The doctor in front of me saw me grabbing the bed in fear, so they took my hand. The needle with the anesthesia was inserted after a quick notice of that happening. They informed me once more that this was the same anesthesia dentists use. I felt the prick, I felt it moving swiftly through areas of my body I've never welt anything before, then I felt less and less, until I felt nothing in that area. I would simply yap on about Mastodon and sometimes my birth place (east frisia) which also exists I the Netherlands (Friesland), but mainly Mastodon. The doctor in front of me kept asking what investors it has and what target group it was made for. I simply said that it is donation based and made for everybody. I tried to explain many concepts that I probably would've explained a lot better if it wasn't for a needle and god-knows-what to create a hole in spine currently happening behind me. Remember when teachers said “You should know this so well that when I call you at 3 in the morning you can respond to it at an instant?” I at least knew Mastodon so well I could respond to it with a school of doctors running around and yelling in Dutch. I truly wouldn't feel anything except for a push or pull. I didn't even know the procedure had begun. The doctors probably said so, I was just talking on and on about whatever came to mind. The doctor continued holding my hand and asking questions, as an assistant downloaded the app, or at least I think he did, because he loudly exclaimed “it's even on the app store”.Around this time, I could not tell you when (probably after just a few minutes had passed, though I felt like I've been here either seconds or months), I felt something most humans will probably never feel. An echo inside of my body, originating not from my vocal chords, but my lower back. It began as a small jerk, as if something was pulled, yet it snapped back, and as a result I felt every bone once. An echo yet the chamber was the insides of my boney. The feeling didn't hurt, not at all, but it was disturbing and fascinating. The doctors said that it was nothing.At this moment I had the idea of whether singing would help push the droplets of spinal fluid out faster, or whether something like that has been tried. I would want to ask a doctor whether we should try something like that next time. Although thinking about it now, I am not sure what to sing or whether I'd have the composure to sing during such a procedure. Before I knew it, the main guy performing the sampling said “okay, I'm going to take the needle out” and all I could think about was “THERE WAS A NEEDLE INSIDE OF ME THIS WHOLE TIME?” I felt nothing. Really nothing. He pulled the needle out and I may have felt a little sting when it moved past my skin, yet I felt no pain, or at least far less pain than the cannula caused.[To Be Continued]
(DIR) Post #Alene9DerOwanvyCwq by ErikUden@mastodon.de
2024-09-04T10:36:14Z
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08:10 (Continuation)At this point I noticed my leg shivering from being so tensed up the entire time. I calmed myself down. According to the doctors everything went very well. Additionally, only 7 minutes had passed since I entered this room. That made zero sense to me, as so much had happened. After everything was done, a bandaid was put over the place where my skin was pricked, and I was helped to lay down on my stomach. I did everything super slowly. Cables where running across my body, as my cannula was on my right arm, they needed to have the blood pressure taken on the left arm, and the (ECG?) cables with suction cups were still running across my chest. Three assistants helped me turn around and lay on my stomach. I felt a bit dizzy as my body was processing the anesthesia. I thought about Mastodon a lot during this time and even felt like I was in a dream like state. I was certainly awake, but time flew by and the world was entertaining. I couldn't believe this was the procedure. I didn't feel anything and thought they were just doing whatever in preparation to it. I told the doctors how I felt, that everything was fine, no pain etc. They drove the bed to my place and told me to continue lying down like this for 30 minutes. A doctor was waiting with me in case anything happens. Even though the bed was standing still, I felt like I was flying forward. I was told I couldn't have a pillow, so my head was on the same height as my back. I dreamed on. I had no idea where this pillow would be put, but later I was positively surprised to learn where it was. I felt very happy about myself and my life. Maybe an effect of the anesthesia, but maybe just overall. I'm happy about where I am in life, because I can even withstand such a procedure. 30 minutes passed and I was told to lie on my back. I was now helped by one doctor, I could do much myself. I could've probably done it the first time and now without help, I can feel all parts of my body and move them, I am just trying to be extra cautious as they suggested. They were very happy about me taking it seriously and not jumping around or doing erratic movements (I was told that some patients do that). Now lying on my back left me wondering and daydreaming once more. Although I felt much better and awake. I would fully wake up during this time. I now saw they gave the blohaj its pillow back and laid it on top of the patient information stand at the end of my bed, giving the blohaj its own bed. I found that quite amusing. I asked the doctor whether they've done so on purpose because I didn't do it, and she said “that's exactly what someone who did this would say.” Sooner than later there was a doctor with me who asked me how I was doing and that my time has passed. After I said I was fine, he began talking about migrants completely out of nowhere. Still in a dizzy state, but slowly becoming more aware of the situation, I listened to his babbling...“Do you feel well? Yeah? Do your parents live in Germany or America? Germany, huh... You know the migrants coming to Europe, they're all rich. They wear expensive clothes, have expensive watches. They're the ones that can afford a ticket. With the elections in Germany you can really see how the will of the people is represented. We need to go there and help them in Africa, not here, like Russia did in...”Very fascinating stuff, really. I didn't ask nor could I care any less about this. It also wasn't an isolated room, so surrounding patients just began laughing and we later talked about it very humorously considering what an odd fella would start a conversation like this. Or how inappropriate it was to do this. Or how dumb this opinion was.[To Be Continued...]
(DIR) Post #AlenkfOGA7TSJo2NYu by ErikUden@mastodon.de
2024-09-04T10:37:24Z
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08:10 (Continuation) Some assistants took notice, they only came to me once the doctor was over with his ramblings, and asked me what that was about. I told them that he just randomly started talking, and they said “Oh, he does that sometimes, but usually not like this. Maybe because you're from Germany he wanted to talk about the elections” SURE, whatever. I'm sure the assistant is also worried about her job as much as I'm worried about my wellbeing if we'd both mobilize against this prick. Regardless, I am sure he won't come to me to talk about this again, because I just showed every sign of disinterest one can show, another patient in the room said.10:00Around this time I went to the breakfast. Every one of our breakfasts is monitored, so I got three slices of bread, two savory pieces of topping (spicy hummus and cheese), as well as two sweet toppings (sprinkles and jam). The three slices of bread also included two packets of butter. I was also supposed to eat one circular rusk and drink one cup of tea. This was a requirement for the study. There would be days where all meals are monitored.Just as I sat down to feast, the one (of us five) girl participants told me that she got less to eat. Apparently, as a woman, you'd get only two slices of bread and one sweet topping. That's ridiculous. I'm a twink, she has muscles. It makes zero sense to give out food by “gender”, especially if you have the data to do it by personal needs. She told me she was still hungry after eating. I told her we should revolt against this. She laughed.Since they only do one lumbar puncture at a time, most of the other patients weren't done. Actually, none of them were done. They were either now also lying in bed, or currently doing the procedure. I was the first of our group and the firs not the day. I have the first beds, I'll be the first for everything on our schedule. They'll always have to add 15-30 minutes for everything we do in order to know when it's their turn. The reason two of my patient mates were sitting here at the cafeteria with me is because their CSF sampling would happen after breakfast.10:44After breakfast was done, I walked back to my room, had a work call, and rested a bit. A slight pain, rather a soft feeling of a push with a minor pain in the skin above the puncture, came back once the anesthesia fully wore off. Since then I've been lying in bed, documenting this day up until now, and just thought about everything. What a great day today was!Another thing we talked about yesterday was the fact we were only five volunteers / patients. The study papers suggested 8, two of which would get a placebo. We're now only five. When told that there were no reserves, we assumed not enough people came to have more people than needed, however currently it seems like not enough people came overall. Is it the fear of the lumbar puncture? Is it the study overall as changes to the brain / central nervous system can be extra dangerous? Was it the many appointments in advance such as MRI scans or not being allowed to take weed? Is there something we don't know? These are the questions that go through your head when preparing for the coming days.To be Continued...
(DIR) Post #AleoaieTHUrvUZROLo by ErikUden@mastodon.de
2024-09-04T10:46:49Z
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10:44 (Continuation) Another interesting thought I had was that the study master told me they would end the study if a medical doctor suggested to do so. If they classify it to be too dangerous to continue, and that would be outside of my control, whether I wish to continue or not. For my own safety I should hence always be honest about how I feel. Though, how did you document that this compound gave people a panic attack and severe disorientation, as well as the inability to form coherent thoughts or sentences for 3-5 days? Did you continue giving the drug then? Was the study ended abruptly after one day but the rest still recorded? Was this not seen as an emergency? How can ONE person have a condition for “3-5 days”. Many questions that swirl around your head when your situation is questionable like this. However, I'm sure there's a logical explanation for it all. I'm just glad to be safe and surrounded by experts, who, in case anything were to be happening, could help me with whatever was going on. Also I like the people that are here with me!12:25I've written most of the previous text up until now. I have a slight headache that started about 30 minutes ago (maybe due to staring at a screen, maybe I didn't sleep well enough, maybe this morning was too stressful, maybe I didn't drink enough). I am going to have a rest from this point on and take it easy! Have a wonderful day!12:44Now posting all of this to Mastodon - I also wonder what the cogstate test training will be like. This afternoon we will be trained on how to do a test regarding our cognitive function.
(DIR) Post #AleojnUgeCZD7GC1lQ by ErikUden@mastodon.de
2024-09-04T10:48:24Z
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@dtabb73 this is what I'm talking about next time!!
(DIR) Post #AleoyJq5BaRhUF7p44 by caldeirag@en.osm.town
2024-09-04T10:48:25Z
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@ErikUden Good luck, your thread is fascinating 😁
(DIR) Post #AleuYCsN3FWI5S7xRY by ErikUden@mastodon.de
2024-09-04T11:53:33Z
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@paprikapink I can ask, but I'll wait for the result of this study and how the people around me experience it.
(DIR) Post #AleukMn80nL8JXTPxA by ErikUden@mastodon.de
2024-09-04T11:55:48Z
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@JanetGrBr We talked about this today! Thanks to both EU and US regulation not requiring any women to be tested in order for medication to be approved, the requirements for women to participate are strenuous. Corporations trying to make money off of medicine don't care about the wellbeing of the people here or when they use this product, so women with their different from men body types that medicine has ignored for eons are in the way and make things more complex. In our entire study group is one women, I was told she is among the only to ever receive this drug.That's among my largest criticism here.
(DIR) Post #AleunuzTJhvxFWwNjk by ErikUden@mastodon.de
2024-09-04T11:56:26Z
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@cb1 of course, and thank you so much for the suggestions!!
(DIR) Post #AlfAZGZ4Q9tj5EcvQ0 by ErikUden@mastodon.de
2024-09-04T14:53:03Z
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@jaapklaver just a volunteer trying to help friends out! Thank you that you like my writing :]
(DIR) Post #AlfDGJryD1xph47lI0 by Ines64@mastodon.de
2024-09-04T15:23:15Z
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@ErikUden Du schreibst das sehr interessant. Auch wenn ich es mir übersetzen lassen muss,,verstehe ich doch das meiste. Ich drücke dir weiterhin die Daumen, das es dir gut geht 😘😘Du kannst mit den Ärzten auch über den Namen Uden reden, schließlich heißt eine Stadt in den Niederlanden so. Vielleicht kennen sie sie.😀
(DIR) Post #AlfEZmmd23uIpBTJia by ErikUden@mastodon.de
2024-09-04T15:37:59Z
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@Ines64 sehr gerne! Ich telefonieren auch gerne mit euch und erzähle alles! Aber es gibt schon viele Ärzte die den Namen „Uden” kennen :]
(DIR) Post #AlfGntZwlOkPrYObIG by DanyWho@troet.cafe
2024-09-04T16:02:55Z
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@ErikUden Spannend zu lesen. Ich könnte sowas ja nicht wenn ständig jemand Nadeln in einen reinsteckt. Wie bekommt man dafür dort mitzumachen?
(DIR) Post #AlfLcpw6Sx379PIzzc by wauz@mastodon.de
2024-09-04T16:56:56Z
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@ErikUdenDas kommt von den Tachyonen. Die fliegen auf der imaginären Achse und das auch noch rückwärts.(Ich könnte dir Filtermatten aus abgereichertem Uran organisieren.)
(DIR) Post #AlfOhqdpZSKueGq8ES by masek@infosec.exchange
2024-09-04T17:31:26Z
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@ErikUden Good luck!
(DIR) Post #AlfRCvF8iAeNo2Eg8u by JanetGrBr@mastodon.social
2024-09-04T17:59:17Z
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@ErikUden I was afraid it would be like this.
(DIR) Post #AlgpJAdcyiPnLeA76W by ErikUden@mastodon.de
2024-09-05T10:04:16Z
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Day 003 of the Multiple Sklerosis Study(Compound Day -1) Tuesday on 2024-09-05Groningen, Netherlands (GMT+1)My Schedule for Today06:00 Telemetry (Connect) 06:30 Intravenous catheter (Check) 07:30 Wellbeing08:10 SB Breakfast08:40 Telemetry (Start) 08:40 Cogstate (Neurocognitive Test Battery) 09:20 Telemetry (Start subject lay down [-24h]) 09:30 Telemetry (Make ECG print [3x]) 09:35 Telemetry (Stop subject lay down [-24h]) 09:35 Vital signs (BP, HR)09:50 Telemetry (Start subject lay down [-23.5h]) 10:00 Telemetry (Make ECG print [3x]) 10:05 Telemetry (Stop subject lay down [-23.5h]) 10:05 Vital signs (BP, HR) 10:20 Telemetry (Start subject lay down [-23h]) 10:30 Telemetry (Make ECG print [3x]) 10:35 Telemetry (Stop subject lay down [-23h]) 10:35 Vital signs (BP, HR) 11:20 Telemetry (Start subject lay down [-22h] 11:30 Telemetry (Make ECG print [3x]) 11:35 Telemetry11:35 Stop subject lay down: [-22h]) 11:35 Vital signs (BP, HR) 12:20 Telemetry (Start subject lay down [-21h]) 12:30 Telemetry (Make ECG print [3x]) 12:35 Telemetry (Stop subject lay down [-21h]) 12:35 Vital signs (BP, HR) 12:40 Cogstate (Neurocognitive Test Battery) 13:20 Telemetry (Start subject lay down [-20h]) 13:30 Telemetry (Make ECG print [3x]13:35 Telemetry (Stop subject lay down [-20h]) 13:35 Vital signs (BP, HR) 13:40 SB Lunch15:00 Intravenous catheter (Check) 15:20 Telemetry (Start subject lay down [-18h]) 15:30 Telemetry (Make ECG print [3x])15:30 Telemetry (Continue) 15:35 Telemetry (Stop subject lay down [-18]) 15:35 Vital signs (BP, HR) 19:00 Wellbeing19:20 Telemetry (Start subject lay down [-14h]) 19:30 Telemetry (Make ECG print [3x])19:35 Telemetry (Stop subject lay down [-14h])19:35 Vital signs (BP HR) 19:40 SB Dinner 21:20 Telemetry (Start subject lay down [-12h]) 21:30 Telemetry (Make ECG print [3x])21:35 Telemetry (Stop subject lay down [-12h]) 21:35 Vital signs (BP, HR) 22:00 Intravenous catheter (Check) 23:15 Telemetry (Continue) My Stats for TodayWater intake: 2 (glasses) 09:50 - 10:20 mild headache (2/10)11:30 - 12:00 mild headache (3/10) 6:20Awoken by staff to put ECG suction cups on (in a new configuration). Leaving me once again looking like I was hugged by an octopus. That morning I realized that the pain of yesterday's lumbar puncture was completely gone. I don't feel anything. No pain, nothing. I was amazed. This time it wasn't a normal ECG, it's a telemetry device called “Surveyor”. It will follow me around for the rest of the next 24 hours and monitor my every move, this is why everything needs to happen on a very rigid schedule today (every food intake, every test etc. has to start the exact minute that it's on the schedule).08:15Told to eat a piece of bread because my eating time has begun. Just a piece, because I was a bit(e) late. Also an assistant informed me I needed to take my medicine / compound on time. I told them that I thought we would only take the compound tomorrow (on Friday) and that that would be the first day. She looked into some files, saw that I was right, and then told me that I just need to finish my breakfast. I was confused with a different study group (despite them checking my name and everything first, as we need wristbands confirming out identity everywhere). 08:35An assistant came to my bed wanting to do the wellbeing with me, which has already been done. I informed them of that, then the assistant realized they were with the wrong study group and left. To be continued...
(DIR) Post #AlgpMINie2xeEUD9F2 by ErikUden@mastodon.de
2024-09-05T10:04:44Z
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08:40I did the cogstate test for the first time for real! It was much quicker, because I did things much better than the first time. Having done it yesterday while I had a headache and really couldn't concentrate wasn't too nice. I still think I was at the top of my abilities, but given the clinical circumstances, it's the best I can do. Now they can measure whether the medicine tomorrow has any effect on my cognitive state. 09:48I spent my time lying down thinking about my beliefs and my life. When do you ever take the time to rethink everything? To question whether what you are doing is right, or how you've come to the point where you are today? With all of these distractions at our disposal it's much easier to stare at a screen in case any cohesive thought may form. I saw this a very good way of spending my many lay downs, as I was simply supposed to lie in bed without reading, watching, or doing anything, whilst staying awake. Just you left alone with your own thoughts. I'm glad I can still do that and be alone with myself. Also they just cleaned the catheter now, not early in the morning. Liars! 11:38 They needed to use a second blood pressure measuring device because mine would keep pumping around my arm and wouldn't stop. I broke it lol.Also during one of the lay downs I dropped my Blohaj on the floor and the three surrounding assistants said “noooo” and one picked it up and brought it back onto my bed as I wasn't allowed to move.
(DIR) Post #AlgpzzJYxGv4gGC4w4 by ErikUden@mastodon.de
2024-09-05T10:12:01Z
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the what sauce?
(DIR) Post #AlgqIGLAOMPYhKerEe by ErikUden@mastodon.de
2024-09-05T10:15:18Z
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In case you are not aware of the racial segregation Roma people are facing in Europe::youtube: https://youtu.be/tmx0uNrFX88 A very good video on the topic by Adam Something. Of course changing the name of a sauce doesn't change anything regarding these people's persecution, I just think it's a wake up call for many in our world to see how blatant and ingrained such racism is in our society. I began a discussion about this here and many people were shocked to learn what Roma people are going through, or have historically faced.
(DIR) Post #AlgqM77cbkaPGX9unw by AkssPR2NVKW3uDQBbU.daswarkeinhuhn@netzkae.se
2024-09-05T10:13:42.342Z
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@ErikUden@mastodon.de 🙄
(DIR) Post #AlgqM7vbbuZJlYXpiK by ErikUden@mastodon.de
2024-09-05T10:15:56Z
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@daswarkeinhuhn I find it fascinating that Germany has had progressive movements to change such racist elements in our language, but other germanic languages may not have had that, hence elements like these remain...
(DIR) Post #AlgqMWyIV2ZnR8zpse by grrrr_shark@supervolcano.angryshark.eu
2024-09-05T10:16:04Z
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@ErikUden that is unfortunately a literal, racist translation...
(DIR) Post #AlgqOJqgGFRDJfHov2 by Larymir@chaos.social
2024-09-05T10:16:24Z
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@ErikUden uff. Also einmal im niederländischen überhaupt das Z-Wort für die Soße noch zu verwenden. Und es dann auch noch wortwörtlich zu übersetzen, um ein Wort zu erhalten, das im Englischen einfach keinen Sinn ergibt, aber den slur nochmal auf Englisch reproduziert.
(DIR) Post #AlgqRZEjVP6luT5Moa by ErikUden@mastodon.de
2024-09-05T10:17:00Z
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@grrrr_shark ,,,the original word “Zigeuner” is racist too,,, https://www.theholocaustexplained.org/ziguener/
(DIR) Post #AlgqayceUVeLFTlCXQ by ErikUden@mastodon.de
2024-09-05T10:18:41Z
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@Larymir Ich finde es faszinierend darüber nachzudenken, dass progressive Bewegungen innerhalb von Deutschland aus einer linguistischen Perspektive dafür sorgen werden, dass germanische Sprachen sich weiter voneinander entfernen. Ich finde das es eine gute Sache ist, dass solche Worte nicht mehr in unserem Sprachgebrauch sind. Ich finde es nur umso „interessanter” das gewisse Sprachen Worte haben werden die dort kulturell „sagbar” sind, obwohl sie im deutschen gleich ausgesprochen nicht okay wären.
(DIR) Post #Algqc2lSZnuYNuOAQi by ErikUden@mastodon.de
2024-09-05T10:18:54Z
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@Larymir Aber ja, diese Übersetzung und das Wort selbst sind einfach... Wow.
(DIR) Post #Algqyk881b3hFeodbU by simondassow@masto.ai
2024-09-05T10:22:59Z
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@ErikUden Was will man von einer unverbesserlichen Kolonialmacht sonst erwarten? Die malen sich ja z.B. immer noch jährlich an um rassistische Traditionen aufrechtzuerhalten (siehe "Zwarte Piet").
(DIR) Post #AlgrX6aT2JKskMSLUe by Irisfreundin@troet.cafe
2024-09-05T10:29:10Z
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@ErikUden Willst du ein ganzes Land missionieren? In den Niederlanden ist die Diskussion vor Jahrzehnten bereits gelaufen und sie haben beschlossen, da sie keine Rassisten sind, ist "zigeuner" als Sammelbezeichnung für Sinti und Roma kein rassistischer Begriff.
(DIR) Post #AlgsCAIm87yM8llAOG by Irmgard@sueden.social
2024-09-05T10:36:33Z
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@ErikUden PaprikasoßeAber lieber wär mir Jägersoße. Bitte ohne Jäger.
(DIR) Post #AlgtOYPIQvYgKYHUrQ by Irmgard@sueden.social
2024-09-05T10:50:02Z
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@ErikUden Was machen wir damit?https://www.zum-mohrenkopf.de/das-restaurant/das-team/
(DIR) Post #AlgtRQ3pv89nJXbs7k by JeroenBaten@mastodon.nl
2024-09-05T10:50:34Z
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@ErikUden literal translation. Not actually made from wandering humans.
(DIR) Post #Algtf3xMttf4oT5eUq by ErikUden@mastodon.de
2024-09-05T10:53:01Z
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@Irmgard ja, das muss auch gehen
(DIR) Post #Algu2LIsZTH1H3Fhrc by Irmgard@sueden.social
2024-09-05T10:57:11Z
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@ErikUden Der Inhaber ist ein "farbiger" Mensch. Ich würde ihn nicht boykottieren. Hat wohl seine Gründe für den Namen. Man sollte ihn vielleicht ganz dezent danach fragen.
(DIR) Post #AlgvYrQykHf6986v3o by ErikUden@mastodon.de
2024-09-05T11:14:20Z
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@Irmgard Achso, mich interessiert ein spezifisches Restaurant nicht. Es geht um das Wort. Ist ja komplett okay wenn er es verwenden will, es geht darum gesellschaftlich mit der Geschichte das Wort ggf. zu vermeiden.
(DIR) Post #AlgvnqQkl8TdNS9MBc by Irisfreundin@troet.cafe
2024-09-05T10:54:36Z
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@anreji @ErikUden In ein fremdes Land zu reisen und dort den Menschen Moral zu predigen finde ich noch viel schlimmer. "Am deutschen Wesen mag die Welt genesen" war ein berüchtigter Nazi-Spruch (auch wenn er von Emannuel Geibel stammte) und die Niederländer erinnern sich am direktesten an die Zeit der Nazi-Besetzung durch Deutsche. Und jetzt wollen Deutsche Ihnen Moral predigen?
(DIR) Post #AlgvnrApznL9gNiA1A by ErikUden@mastodon.de
2024-09-05T11:16:57Z
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@Irisfreundin @anreji Moral ist nicht Ländergebunden, was richtig und falsch ist hängt nicht von Ort ab. Die Niederlande ist jetzt auch nicht kulturell so unterschiedlich wie z.B. würde jemand aus Deutschland nach Südamerika reisen. Die Niederlande hat ihre eigene Kolonialgeschichte, genau wie Deutschland, sowie (auch in beiden Fällen) eine Geschichte mit antiziganistischem Verhalten. Beide Sprachen sind germanisch, und „Zigeuner” bedeutet in beiden Sprachen das gleiche, hat zudem auch den gleichen historischen Kontext.Also, ja. Ich komme hier her und prädige Moral, vor allem kläre Ich aber auf denn viele hier haben noch nie von der sogar bis heute andauernden (jedoch auch historischen) Verfolgung und Unterdrückung der Sinti und Roma gehört.
(DIR) Post #Alh1QGSQwHLqsF4ium by Irisfreundin@troet.cafe
2024-09-05T12:19:58Z
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@ErikUden @anreji Die Niederlande haben noch niemals Deutschland überfallen. Dir fallen die kulturellen Unterschiede nicht auf, weil sie an der Oberfläche nicht sehr sichtbar sind. Du musst das, was sie dir aus Höflichkeit erzählen nicht für bare Münze nehmen.
(DIR) Post #Alh3fbDaEZcDVtZLf6 by Irmgard@sueden.social
2024-09-05T12:45:08Z
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@ErikUden Ja, verstehe ich. Wie den essbaren "Mohrenkopf". Wir im Bayerischen Wald kannten diesen Ausdruck nicht. Bei uns war das ein "Bummskopf". 😂
(DIR) Post #AlhC24ZKaY0YXzy6u8 by elbtalpomeranze@mastodon.social
2024-09-05T14:18:53Z
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@ErikUden Du beschreibst das alles sehr anschaulich. Dies & deine Gedanken dazu ... sehr interessant! Ich werde deinen Bericht weiter verfolgen. Alles Gute für dich!🌻🐬
(DIR) Post #AlhkZ6ImYwvrv79Gb2 by unbee@mastodon.de
2024-09-05T20:45:50Z
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@ErikUden i will still call it Zigeunersauce im so used to it sorry
(DIR) Post #Alhkx40OkjBLkPyZFY by ErikUden@mastodon.de
2024-09-05T20:50:10Z
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@unbee no. I will come after you.
(DIR) Post #AlhnwPvS4HZRIy2t1s by ErikUden@mastodon.de
2024-09-05T21:23:40Z
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They're gonna draw blood tomorrow 12 times. ICON is a vampire and I am a tiny little lab rat :ratcrown:
(DIR) Post #Alho3y6dNuapLAsQQy by pochitoque@sivar.cafe
2024-09-05T21:25:00Z
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@ErikUden hope all goes well for you Mr. Erik.
(DIR) Post #Alho5J8Gh8DWqHHP0K by janisf@mstdn.social
2024-09-05T21:25:16Z
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@ErikUden Ohh, hugs! I hope they can get it through few holes than that. Wow. 12?
(DIR) Post #Alho8KzEG0h1SgUq12 by ErikUden@mastodon.de
2024-09-05T21:25:49Z
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@janisf haha, no I have an intravenous catheter for exactly this purpose!!! No worries. No needles tomorrow. :blobrat_snugglecat:
(DIR) Post #Alho8wfMALNMK3UVJg by ErikUden@mastodon.de
2024-09-05T21:25:57Z
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@pochitoque thank you so much!!
(DIR) Post #AlhoHk1sWCDjjjDgaO by pochitoque@sivar.cafe
2024-09-05T21:27:30Z
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@ErikUden how about one of this ones:
(DIR) Post #AlhoKG8K7y4JstR2I4 by TurbodemokratHB@hessen.social
2024-09-05T21:27:58Z
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@ErikUden @janisf Vielleicht pieksen sie dich trotzdem.Wenn du artig fragst.
(DIR) Post #AlhovGDclxMardYf2W by ErikUden@mastodon.de
2024-09-05T21:34:40Z
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@pochitoque oh my god.... this is... the nr. 1 thing I will get in Groningen once I am outta here......
(DIR) Post #AlhowT1qd9VUspcob2 by pochitoque@sivar.cafe
2024-09-05T21:26:02Z
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@ErikUden a warm chocolate cup for you as comfort food for those moments that you are having.
(DIR) Post #AlhowTlZt85RAf1KsK by ErikUden@mastodon.de
2024-09-05T21:34:52Z
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@pochitoque absolutely... thank you so much... Will do!!
(DIR) Post #AlhoxLdHcBXOEZYTRY by ErikUden@mastodon.de
2024-09-05T21:35:03Z
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@TurbodemokratHB @janisf hahaha
(DIR) Post #AlhoypNWVRb0mKtBeS by pochitoque@sivar.cafe
2024-09-05T21:35:19Z
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@ErikUden great Mr Erik, enjoy it.
(DIR) Post #AlhsPio9LKVe57rK8O by ErikUden@mastodon.de
2024-09-05T22:13:46Z
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Day 004 of the Multiple Sklerosis Study(Compound Day 1) Thursday on 2024-09-06Groningen, Netherlands (GMT+1)My Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = a meal that is observed for the study06:30 Intravenous catheter (Check) 07:15 Telemetry (Continue) 07:30 Wellbeing (Pre dose) 08:10 Telemetry (Start subject lay down [0h]) 08:20 Telemetry (Make ECG print [3x]) 08:25 Telemetry (Stop subject lay down [0h])08:25 Vital signs (BP, HR) 08:30 Blood samplingPK: Sample 1PL PD 2-AG: Sample 102SR PD 2-AG: Sample 302Genotyping: Sample 40108:30 Transfer bloodtubes 08:30 Cogstate (Neurocognitive Test Battery) 09:00 Urine collectionUrinate into toiletStart container 109:10 SB Breakfast (Start) 09:40 Dose (RO7268489 or placebo)09:40 Dose (check) 09:40 Water fast (Start) 09:50 Telemetry (Start subject lay down [0.50h])10:00 Telemetry (Make ECG print [3x measurement])10:05 Telemetry (Stop subject lay down [0.50h])10:05 Vital signs (BP, HR) 10:10 Blood samplingPK: Sample 2SR PD 2-AG SR: Sample 30310:10 Transfer bloodtubes10:20 Telemetry (Start subject lay down [1h])10:30 Telemetry (Make ECG print [3x]) 10:35 Telemetry (Stop subject lay down [1h]) 10:35 Vital signs (BP, HR) 10:40 Blood sampling (PK: Sample 3) 10:40 Transfer bloodtubes11:10 Blood sampling (PK: Sample 4) 11:10 Transfer bloodtubes11:20 Telemetry (Start subject lay down [2h])11:30 Telemetry (Make ECG print [3x])11:35 Telemetry (Stop subject lay down [2h])11:35 Vital signs (BP, HR) 11:40 Blood sampling PK: Sample 5PL PD 2-AG: Sample 103SR PD 2-AG: Sample 30411:40 Transfer bloodtubes11:40 Water fast (Stop) 12:20 Telemetry (Start subject lay down [3h]) 12:30 Telemetry (Make ECG print [3x]) 12:35 Telemetry (Stop subject lay down [3h]) 12:35 Vital signs (BP, HR) 12:40 Blood sampling (PK: Sample 6) 12:40 Transfer bloodtubes12:40 Cogstate (Neurocognitive Test Battery) 13:20 Telemetry (Start subject lay down [4h])13:30 Telemetry (Make ECG print [3x])13:35 Telemetry (Stop subject lay down [4h])13:35 Vital signs (BP, HR) 13:40 Blood samplingPK: Sample 7PL PD 2-AG: Sample 104SR. PD 2-AG: Sample 30513:40 Transfer bloodtubes13:40 SB Lunch (Check post dose restrictions) 15:00 Intravenous catheter (Check) 15:20 Telemetry (Start subject lay down [6h])15:30 Telemetry (Make ECG print [3x])15:35 Telemetry (Stop subject lay down [6h])15:35 Vital signs (BP, HR) 15:40 Blood sampling (PK: Sample 8) 15:40 Transfer bloodtubes15:40 Urine collectionStop container 1Start container 215:40 Transfer Urine containers16:15 Telemetry (Continue) 16:15 Urine collection (Continue) 17:40 Blood sampling (PK: Sample 9) 17:40 Transfer bloodtubes17:40 Telemetry Stop and disconnect Subject can take a shower18:10 Telemetry (Connect and start) 19:00 Wellbeing19:20 Telemetry (Start subject lay down [10h])19:30 Telemetry (Make ECG print [3x])19:35 Telemetry (Stop subject lay down [10h])19:35 Vital signs (BP, HR) 19:40 Blood samplingPK: Sample 10SR PD 2-AG: Sample 30619:40 Transfer bloodtubes19:40 SB Dinner21:20 Telemetry (Start subject lay down [12h])21:30 Telemetry (Make ECG print [3x])21:35 Telemetry (Stop subject lay down [12h])21:35 Vital signs (BP, HR)21:40 Blood sampling (PK: Sample 11) 21:40 Transfer bloodtubes21:40 Urine collectionStop container 2Start container 321:40 Transfer Urine containers22:00 Intravenous catheter (Check) 23:15 Telemetry (Continue) 23:15 Urine collection (Continue) 85 appointments in total 21 blood samples being drawn9 times are vital signs recordedTo be continued...
(DIR) Post #Alhsc9m0uZupBln0LY by ErikUden@mastodon.de
2024-09-05T22:16:01Z
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My Stats for TodayN/AMy Notes for Today00:14I just realized what a full day is ahead of me! 21 blood samples? 85 appointments in total? Also the first time I'm taking the wonder drug! When I'll wake up in 6 hours I'm gonna have an interesting day. It'll be hard recording much, so I thought I'd post the schedule ahead of time. I'm excited for what's to come tomorrow!
(DIR) Post #AlhtCSSKvYgFYatZh2 by IngridAusOL@norden.social
2024-09-05T22:22:34Z
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@ErikUden Ist das echt derartig durchgetaktet???Herrje, und das alles morgen???? Ich weiß gar nicht, was ich dazu sagen soll, außer: 🤗🤗🤗
(DIR) Post #AlhtsRq5bxKzo31nbU by ErikUden@mastodon.de
2024-09-05T22:30:11Z
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@IngridAusOL danke für den Support, wirklich!! Ich muss mal dringend schlafen gehen haha
(DIR) Post #AlhubEpOphpYU53xZY by IngridAusOL@norden.social
2024-09-05T22:38:15Z
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@ErikUden Ja los, sonst wird das morgen nix mit diesem Marathon 💪
(DIR) Post #AlhvdzhlcIMsP5N3b6 by grrrr_shark@supervolcano.angryshark.eu
2024-09-05T22:49:58Z
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@ErikUden I figured :(
(DIR) Post #AliaA0IIxPxDfGHNEe by aral@mastodon.ar.al
2024-09-06T06:23:24Z
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@ErikUden Good luck 💕
(DIR) Post #AliePORppuZsjiKZGK by fxtoledo@piaille.fr
2024-09-06T07:11:33Z
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@ErikUden Good Luck!
(DIR) Post #AliiQVKm7R4yCQoW3s by Ines64@mastodon.de
2024-09-06T07:56:35Z
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@ErikUden Ich wünsche dir viel Glück
(DIR) Post #Aliod7ojSruykkE9PU by ErikUden@mastodon.de
2024-09-06T09:06:05Z
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11:06Thank you RO7268489 or placebo, you're very cool
(DIR) Post #Alj4KVFzgt2pDM7Ywa by pochitoque@sivar.cafe
2024-09-06T12:01:58Z
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@ErikUden good morning/afternoon, Mr. a cup of cocoa to keep than brain of yours running in the magic carpet to combat the issue you are confronting (battling a dragon). cheers
(DIR) Post #AljVCN1d6r6G87kTy4 by mdione@en.osm.town
2024-09-06T17:03:04Z
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@ErikUden Good luck!I just wonder if it's OK to share so much info about this kind of studies. I hope you're not invalidating the outcomes by doing this. Did you check?
(DIR) Post #AljW1mVG8vSbuv7e7M by ErikUden@mastodon.de
2024-09-06T17:12:22Z
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@mdione I asked about every information I wanted to post! Most of it was public in the first place (or included in info sent to anyone who applied), so I am sure it's fine! Thanks for asking, though ^ ^
(DIR) Post #Aljbl7Je6lbbGi7xBY by eco_amandine@mastodon.cr
2024-09-06T18:16:33Z
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@ErikUden I wish you the best in the treatment.
(DIR) Post #AljhSpnh5g3zSSqbfU by neurologo@mastodon.cloud
2024-09-06T19:20:26Z
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@ErikUden thank you for participating in the advancement of science
(DIR) Post #Alk3wQ5tQfB3PTs9dg by JanetGrBr@mastodon.social
2024-09-06T23:32:21Z
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@ErikUden I've read this book by Alexander Ramati recently:https://www.rebuy.de/i,1201635/buecher/als-die-geigen-verstummtenIt's about a group of Roma from Poland during WWII.
(DIR) Post #Alkoc7kacGQ2ZXjRmi by GreenSkyOverMe@ohai.social
2024-09-07T08:15:18Z
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@ErikUden Blåhaj \o/
(DIR) Post #AlkoekCAeMjsNzslGa by ErikUden@mastodon.de
2024-09-07T08:15:49Z
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Day 005 of the Multiple Sklerosis Study(Compound Day 2) Saturday on 2024-09-07Groningen, Netherlands (GMT+1)My Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study06:30 Intravenous catheter (Check) 07:15 Telemetry (Continue) 07:15Urine collection (Continue) 07:30 Wellbeing (Pre dose) 08:30 Telemetry (Start subject lay down [24h]) 08:40 Telemetry (Make ECG print [3x])08:45 Telemetry (Stop subject lay down [24h])08:45 Vital signs (BP, HR) 08:55 Blood samplingPK: Sample 12PL PD 2-AG: Sample 105SR PD 2-AG: Sample 307Remove Intravenous catheter8:55 Transfer bloodtubes9:00 Urine collectionStop container 3Stop collection09:00 Transfer Urine containers09:10 Breakfast (Start) 09:40 Dose (RO7268489 or placebo) 09:40 Dose check09:40 Water fast (Start) 09:40 Telemetry StopDisconnect + Archive10:40 Intravenous catheter (Inspection) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch15:30 Afternoon snack18:30 Dinner19:00 Wellbeing21:30 Evening snackMy Stats for TodayWater intake: 3 (glasses, one tea, one compound)My Notes for Today07:02I woke up through my second alarm (one at 06:50, the other at 07:00), and then dropped my phone. I have to sincerely apologize to my entire study group. Also look at my schedule!! Look at how small it is for today! 08:55I did my blood samples and they went fine, but after removing the cotton wool they put on for sleeping, parts of it got stuck or were left around the cannula (some of it got stuck inside the tube that goes to the left from my perspective), the assistant said it was fine. Whilst trying to clean a clot, they also put in saline solution (salt solution) halfway, and then drew blood into the same syringe by pulling it back out. It was all probably still sanitary, just very unconventional compared to the other days. 09:07 I just got done with some other sampling, when I realized they forgot to take out my cannula. I told a doctor that we may need to do it after my breakfast, he said “we can do it quick”, so he actually did take my intravenous catheter out.... with 45 seconds left to go to the breakfast. Sadly it bled through the paper they taped over it a bit, but when I arrived at breakfast I was “on time” (after eating one piece of bread so that I technically began eating). 09:10Look at my breakfast (picture 1), breakfast is always an SB (study-bound) breakfast, meaning the food I have to eat is very much controlled. I am allowed to choose two savory and two sweet toppings. 09:34 (written afterwards) I googled the compound name and figured out our sponsor was Roche! They intend on publishing this in some “high-impact journal” like Nature! Hehe, I can always claim I helped publish a study in Nature. “Yeah, I was there, I was the lab rat”. There was much less anticipation in giving the drug today. Just two assistants giving me the medicine. We read through what it said on the compound flask. I've been trying to get a picture of it when they're not looking, but they're guarding it like gold (for obvious reasons). Apparently this compound is made at ICON only 48 hours in advance and specifically has my name on it. Very interesting to see what can be done if good money can be made from it. 09:42Just took the compound for a second time! Let's see what effects I'll have today. I also have very little to no appointments today, so a lot of rest and having fun. 09:56A doctor is talking to me and claims to speak like... dozens of languages? Who is this guy? “it's just an Afghani language...” what does that mean? “My friend is from this region of Syria where they speak [...], so I learned that too” WHO ARE YOU?10:14Oh man, I'm so happy there are no cables or catheters running through or around my body anymore!
(DIR) Post #AlkpWowrC7mclTVNPU by GreenSkyOverMe@ohai.social
2024-09-07T08:22:54Z
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@ErikUden (weich) (aber nicht saftig)
(DIR) Post #AlkpWpng1k2BPIDYjw by ErikUden@mastodon.de
2024-09-07T08:25:33Z
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@GreenSkyOverMe Du suchst mich heim in meinem eigenen Zuhause, nur um so einen Disrespekt aufzuweisen. Hier ein Video davon wie ein guter Pfirsich klingen soll:https://youtube.com/shorts/fXDrjevH3-I
(DIR) Post #Alkq74C7zE7uTWvnfs by GreenSkyOverMe@ohai.social
2024-09-07T08:32:06Z
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@ErikUden Pfirsiche sollten weich sein!
(DIR) Post #AlkqVFQprHZSHELDDE by GreenSkyOverMe@ohai.social
2024-09-07T08:33:03Z
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@ErikUden weich! Nicht knackig!
(DIR) Post #AlkqVGFWoo7WoS3hE8 by ErikUden@mastodon.de
2024-09-07T08:36:30Z
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@GreenSkyOverMe das ist ja nicht auszuhalten!
(DIR) Post #AlkqpYAjtLlsBtUdPs by GreenSkyOverMe@ohai.social
2024-09-07T08:40:10Z
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@ErikUden Sie könnten bei der Studie ja gleich mal mit analysieren, wie es zu Störungen bei den Pfirsichknackigkeitspräferenzen kommt
(DIR) Post #AlksSXqj7qXARCI4bg by sarah_ist_muede@troet.cafe
2024-09-07T08:42:07Z
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@GreenSkyOverMe @ErikUden Aber ehrlich! Weiche Pfirsiche ftw! Gleich werden wir geblockt oder gesperrt oder Schlimmeres. 😅
(DIR) Post #AlksSYXcYMqSaEMKSu by ErikUden@mastodon.de
2024-09-07T08:58:25Z
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@sarah_ist_muede @GreenSkyOverMe Ihr seid witziger als es die Mastodon-Polizei erlaubt!
(DIR) Post #AlkssCCgE8qQpin3ZY by sarah_ist_muede@troet.cafe
2024-09-07T09:03:03Z
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@ErikUden @GreenSkyOverMe Ist nur eine Frage des guten Geschmacks.
(DIR) Post #AlkvNRngUKS25j812G by Atirut@toot.community
2024-09-07T09:31:05Z
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@ErikUden contributing to science, I see?
(DIR) Post #AlkwberynGOodKTfE0 by ErikUden@mastodon.de
2024-09-07T09:44:52Z
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@Atirut “I've helped publish a paper in Science Magazine”
(DIR) Post #Alky1RmWB3ALWametE by ErikUden@mastodon.de
2024-09-07T10:00:45Z
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11:59I just had the tiniest morning “snack” of my life
(DIR) Post #AlkzlApdczCsEObxWy by SuePChicken@troet.cafe
2024-09-07T10:20:12Z
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@ErikUden Ich hab das gar nicht mehr mitbekommen. Wünsch dir alles Gute. Halt dich wacker. (erstmal Glöckchen aktiviert) 🌻
(DIR) Post #All2N0Q2zSlOqhoCi8 by _maleficentgirl@troet.cafe
2024-09-07T10:49:28Z
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@ErikUden Man, I'd be starving
(DIR) Post #All7Auh0xEt1NvnYR6 by pochitoque@sivar.cafe
2024-09-07T11:43:18Z
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@ErikUden Good morning/afternoon, a cup of cocoa to go with those snacks Mr. feel better.
(DIR) Post #All8lXnr7Wmj3x1rZg by ErikUden@mastodon.de
2024-09-07T12:01:09Z
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@pochitoque will do!!
(DIR) Post #AllC8mmJuOt01x5Jmi by Ines64@mastodon.de
2024-09-07T12:38:57Z
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@ErikUden Gibt es eigentlich auch mal was gesundes? So Obst oder Gemüse. So n knackigen Pfirsich 🍑 vielleicht?
(DIR) Post #AllX1OpSeS3ElNsCOW by guayabito@mastodon.cr
2024-09-07T16:32:47Z
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@ErikUden 👏👏👏👏
(DIR) Post #Aln2f3ANu2mMtm0Taq by ErikUden@mastodon.de
2024-09-08T10:02:10Z
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Day 006 of the Multiple Sklerosis Study(Compound Day 3) Sunday on 2024-09-08Groningen, Netherlands (GMT+1)My Schedule of TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study07:30 Wellbeing (Pre dose) 07:45 Physician task (Neurological examination) 08:15 ECG (3x measurements]) 08:15 Vital signs (BP, HR) 08:25 Blood sampling (PK: Sample 13) 08:25 Transfer bloodtubes08:25 Cogstate (Neurocognitive Test Battery) 09:10 Breakfast (Start) 09:40 Dose (RO7268489 or placebo) 09:40 Dose check09:40 Water fast (Start) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch13:30 Bowling15:00 Afternoon snack17:30 Dinner19:00 Wellbeing20:30 Evening snack 11:46I had a headache the entire morning. It became worse and worse. For some reason, it only stops when laying down. Maybe it's a vitamin D deficiency caused by not being outside as much? Maybe it's the air here being super sterile, with no humidity, and low tmeperature. Maybe it is my new cycle, or the stress of so many appointments in a day? However, laying down horizontally does the trick every time. Whether eyes closed or open, outside, sitting or standing, as long as I'm upwards my head hurts? Very odd!I was also just informed that we CAN get paracetamol even during this study. Let's hope my headaches are no more!
(DIR) Post #Aln2rA9Hlj8C1qGhe4 by davep@infosec.exchange
2024-09-08T10:04:20Z
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@ErikUden Vitamin D is fat soluble and you can stock up for months after the summer, by the way.
(DIR) Post #Aln3VFGIB6HNTBet4S by ErikUden@mastodon.de
2024-09-08T10:11:36Z
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idk why but I don't want to wear the alarm wristband any tighter
(DIR) Post #Aln3YGvuQ9gHWPZGOu by ErikUden@mastodon.de
2024-09-08T10:12:08Z
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@gabriel Ohhh. That makes sense. Thank you!
(DIR) Post #Aln3qccQX4HDzXCm1o by ErikUden@mastodon.de
2024-09-08T10:15:28Z
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In case anyone is wondering what a Cogstate test is like!
(DIR) Post #Aln459BIGMvn2IRKKG by galo_vasco@ursal.zone
2024-09-08T10:18:04Z
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@ErikUden Cognitive State?
(DIR) Post #Aln4U8riZeFtIRCa0W by _maleficentgirl@troet.cafe
2024-09-08T10:22:34Z
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@ErikUden ah yes ofcourse , green and .... blue the *ahem* "traditional" colours for yes and no :blobcatfacepalm2:
(DIR) Post #Aln52smuLGHDZHW9Ym by ErikUden@mastodon.de
2024-09-08T10:28:51Z
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This is how a Cogstate (cognitive battery) test works:Every test has a practice right before it so you can sort of test whether you understand what is being asked of you.First, they check whether your YES and NO buttons are even working, so the screen simply shows “Yes” or “No” and you have to press accordingly. Also the No button is on the left and the Yes button is on the right for me. CardsThen, you are asked to press Yes when a card turns face up on the screen. Basically a stack of cards is shown and a top card (always the same Joker card) is turned around, as soon as that happens you're supposed to press the button. I assume this is to test your reflexes. Afterwards you're supposed to press “Yes” when a red card is shown and “No” when a black card is shown. I believe this is to test not just your reflexes, but your processing of information + reflexes (you can't just press the same button as soon as something changes on screen, you need to press the right button). The last card test is the trickiest, now you need to press “Yes” when the same card is shown after the other on screen. So, when the test begins, you immediately need to press “No”, as no card has been shown previously, but if the same card is shown right after, you'll have to press “Yes”. If a different card is then shown, you'll have to press “No”. I believe this is to test how swiftly you can process information, or even the same input, without the same outcome. In the previous test, every red card was a “Yes” and every black card a “No”. Now, you can see the same card twice and a different response is required. You can't just associate one image with a reaction, you need to react based on the context of the images before. I would assume that tests a different ability! MazeTechnically, there is only one maze, however, you're asked to complete it multiple times. You can't use the “Yes” or “No” buttons anymore, as with the previous tests, you'll have to press things on the screen. You have a starting point (top left) and an end point (bottom right) and you're supposed to find the invisible path from the beginning to the end. You can only guess, but are then asked to repeat the maze over and over again. I think this tests both response time and memory! SymbolsHere you are asked to associate a sequence of numbers with a randomly generated set of symbols. The computer shows you multiple numbers one after the other, you need to press the according symbol. At the top, you are being shown what number represents what symbol. The symbols at the bottom, however, are not in the same order as the numbers at the top. This tests pattern recognition? Maybe? After a short time I can't concentrate too well on this test, so I stop performing well. The End
(DIR) Post #Aln54ywIRT1xE2uUF6 by ErikUden@mastodon.de
2024-09-08T10:29:17Z
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@galo_vasco yes! It checks your mental abilities.
(DIR) Post #Aln568MesvIwkMn2gq by tenkoman@sueden.social
2024-09-08T10:29:27Z
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@ErikUden Smartwatch-Blässe nach dem Sonnenbad
(DIR) Post #AlnBJZHciDSLivDx4q by pochitoque@sivar.cafe
2024-09-08T11:39:06Z
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@ErikUden good morning Mr. hoping that you has sleep bettr, if not here have a cup of cocoa.... soft and warm.
(DIR) Post #AlnNRwMnyFQr5BPFse by ErikUden@mastodon.de
2024-09-08T13:55:06Z
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@gabriel Thank you for this comment. Because of you writing this, the assistants and doctors here only then realized that my headaches began right after lumbar puncture and classified it as a symptom of that. We are now discussing further procedures such as closing the hole with a blood patch, but only as the last option. Thank you for writing a comment, you made my life a lot better!
(DIR) Post #AlnNw3IQluGvGGiclc by ErikUden@mastodon.de
2024-09-08T14:00:28Z
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@gabriel Thank you very much. So the hole closes itself? The doctors also discussed The possibility of a blood patch... But do not worry, I will rest well. The procedure was 4 days ago, still lots of time to rest, read books, sleep. Just a good time! ❤️
(DIR) Post #AlnOjehaUEVRSl8dOa by ErikUden@mastodon.de
2024-09-08T14:09:31Z
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15:42A Senior Research Associate of ICON came and asked me how I was doing. She said she would probably call an “Investigator” to ask what should be done in this case, but later decided against it, citing that we are allowed to take 200mg of paracetamol a day. Moments ago I got a pear to eat and took two pills of probably paracetamol (didn't read them, since I had to sit in the Kitchen and couldn't concentrate due to sitting upwards). She also discussed a “blood patch” (closing the hole with a patch of autologous blood), yet that would be the last option. We'll try painkillers first. Can the hole close itself? Didn't get a definite answer on that one...
(DIR) Post #AlnPJ90RoAnHaKslEG by ErikUden@mastodon.de
2024-09-08T14:15:52Z
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@gabrielThey made me lie down for half on our on my stomach (I was still lying with my head on my chin) and the half hour after that I was lying on my back!Next time I will lie for a longer time if they let me and the schedule doesn't ask for anything. I remember the two days after that really moving slowly in order for nothing bad to happen.Thank you for the explanation! I now get what is going on!Next time I will be a sloth snail hybrid on vacation :blobcatmeltlove:
(DIR) Post #AlnPUnJCIyn9lZCvh2 by ErikUden@mastodon.de
2024-09-08T14:18:02Z
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15:42A Senior Research Associate of ICON came and asked me how I was doing. She said she would probably call an “Investigator” to ask what should be done in this case, but later decided against it, citing that we are allowed to take 200mg of paracetamol a day. Moments ago I got a pear to eat and took two pills of probably paracetamol (didn't read them, since I had to sit in the Kitchen and couldn't concentrate due to sitting upwards). She also discussed a “blood patch” (closing the hole with a patch of autologous blood), yet that would be the last option. We'll try painkillers first. Can the hole close itself? Didn't get a definite answer on that one...16:10Apparently the hole doesn't close for younger and thinner patients when a needle that's too thick is being used for the lumbar puncture. For twinks like me, they'd need to try it with a thinner needle. I'll suggest that the next time.
(DIR) Post #AlnWemNZJbLlSTxbiC by stiefel_fan@troet.cafe
2024-09-08T15:38:14Z
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@ErikUden6 months no weed? Do you know why?
(DIR) Post #AlnYhKuq4zv33jrxrs by ErikUden@mastodon.de
2024-09-08T16:01:08Z
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@stiefel_fan Yes! I do understand why. The compound I am taking does something to the cannabinoid receptors in the brain, the same ones that do “something” (not a medical expert here) when you take weed. They really want to ensure nothing collides here!
(DIR) Post #Alncxc3uUtr6gh84Jc by Ines64@mastodon.de
2024-09-08T16:48:52Z
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@ErikUden Auf jeden Fall, danach fragen.🤔
(DIR) Post #AlngeYUbwZ2XvqmoYS by SuePChicken@troet.cafe
2024-09-08T17:30:14Z
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@ErikUden 🩹 💕
(DIR) Post #AlniGyuQHD4EoqkLAm by stiefel_fan@troet.cafe
2024-09-08T17:48:24Z
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@ErikUdenI know from my wife, that headaches could be side effect of lumbar puncture.Hope everything goes well! 🍀🤞
(DIR) Post #Alnir6fetaE5Jj4B9M by stiefel_fan@troet.cafe
2024-09-08T17:54:56Z
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@ErikUdenDo they have vampires in the basement? 😜
(DIR) Post #AlntOHvV4GVTK6w9jc by ErikUden@mastodon.de
2024-09-08T19:52:59Z
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@stiefel_fan would make sense!! If Peter Thiel gets any of this I would stop everything
(DIR) Post #Aloo7uOKUu195JkgQi by ErikUden@mastodon.de
2024-09-09T06:28:43Z
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Day 007 of the Multiple Sklerosis Study(Compound Day 4) Sunday on 2024-09-09Groningen, Netherlands (GMT+1)My Schedule for Today07:30 Wellbeing (Pre dose) 07:40 Urine clinical chemistry (Not sooner) 08:40 ECG (3x measurements) 08:40 Vital signs (BP, HR)08:55 Blood samplingPK: Sample 14SR PD 2-AG: SampleClinical chemistry08:55 Transfer bloodtubes09:10 Breakfast (Start) 09:40 Dose (RO7268489 or placebo) 09:40 Dose check 09:40 Water fast (Start) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch15:30 Afternoon snack18:30 Dinner19:00 Wellbeing21:30 Evening snackMy Stats for TodayWater intake: 4 (glasses)My Notes for Today02:00 (written afterwards)I was once again woken up by an assistant telling me my wristband sent off an alarm and I need to wear it tighter. Also, she said that my wristband sounds an alarm for bed 17 (for some reason). I am bed 13. So in shock she realized this alarm was not for me but for bed 17. So she went to bed 17 to check what's going on there, assuming that they accidentally swapped wristbands for us both. I fell asleep immediately after, so I have no idea what went on there.
(DIR) Post #AloosR7l87ylvNBgdk by vwdasher@weird.autos
2024-09-09T06:37:07Z
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@ErikUden feeling all ok I hope?
(DIR) Post #Aloq5R3cmzcXR712mG by ErikUden@mastodon.de
2024-09-09T06:50:42Z
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@vwdasher today's a lot better than all other days! Especially since I now know where my headaches are from and what I can do against them!
(DIR) Post #AloqqeRapsxuZ3k10S by vwdasher@weird.autos
2024-09-09T06:59:12Z
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@ErikUden that is great news! It's been fascinating reading along with your progress.
(DIR) Post #AlquSlJoPgYr4HsyvY by ErikUden@mastodon.de
2024-09-10T06:49:09Z
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Day 008 of the Multiple Sklerosis Study(Compound Day 5) Sunday on 2024-09-10Groningen, Netherlands (GMT+1)My Schedule for Today07:30 Wellbeing (Pre dose) 08:40 ECG (3x measurements after 10m) 08:40 Vital signs (BP, HR) 08:55 Blood sampling (PK: Sample 15) 08:55 Transfer bloodtubes09:10 Breakfast (Start) 09:40 Dose (RO7268489 or placebo) 09:40 Dose check09:40 Water fast (Start) 11:40 Water fast (Stop (11:40 Morning snack13:10 Lunch15:30 Afternoon snack18:30 Dinner19:00 Wellbeing21:00 Evening SnackMy Stats for TodayWater intake: 1 (glass)07:15 - Now slight pain in the lower left back. It extends to the soreness of my legs.07:15 - Now arms are sore and slight muscle ache too(already since yesterday until now) a slight pain in my lower left back, under the lumbar puncture. It extends until my upper left leg. Might be soreness/stiffness/pain, might be something else. Headaches are gone!My Notes for Today08:31Just managed to have a shower before any ECGs! I was just on time!
(DIR) Post #AlrJOlOyewH31RUYZU by ErikUden@mastodon.de
2024-09-10T11:28:33Z
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im currently having a panic attack
(DIR) Post #AlrJhBOmk4g0rYBWoy by stefan@stefanbohacek.online
2024-09-10T11:31:51Z
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@ErikUden You are true hero, respect! (And thanks for a chuckle with that alt text.)
(DIR) Post #AlrJjj06mWonelr3IG by ErikUden@mastodon.de
2024-09-10T11:32:21Z
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I am currently higher than the moon.
(DIR) Post #AlrJrzqy0ZK0EyWUlc by ErikUden@mastodon.de
2024-09-10T11:33:50Z
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tom scott ahh toot:tomscott_is_at: i am currently in my bed surrounded by 8 doctors all struggling to figure what us going on (the cannabinoid receptors are doing their thing)
(DIR) Post #AlrJxXeRm7hoVlJM0m by ErikUden@mastodon.de
2024-09-10T11:34:50Z
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expect a 10000 words paragraph on how I'm feeling today. this will be a [1/x] kinda thread
(DIR) Post #AlrK8mmhqnSQdDXI9Y by ErikUden@mastodon.de
2024-09-10T11:36:51Z
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i can really recommend hitting that RO7268489, jesus, the doctors joked that now “feeling like a hamster” will have to be on the side-effect list
(DIR) Post #AlrKFtz1U6LOz7gr4q by ErikUden@mastodon.de
2024-09-10T11:38:10Z
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if you ever take this shit on a 0.6 milligram per day dosis, remember that one of the side effects is being astral projected on the outskirts of the universe... man... what is going on
(DIR) Post #AlrKJRxtb6A9FKr3rc by ErikUden@mastodon.de
2024-09-10T11:38:48Z
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It all began about 12:15 when I looked
(DIR) Post #AlrKLqh2d6DKWD7CmO by _maleficentgirl@troet.cafe
2024-09-10T11:39:10Z
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@ErikUden Question: is THE StarTrek Theme playing?
(DIR) Post #AlrKtPuohAj7JYZ5fM by davep@infosec.exchange
2024-09-10T11:45:11Z
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@ErikUden Blimey. You ok? Are they going to continue with you?
(DIR) Post #AlrLP52ppMWLqsPiCG by james@bne.social
2024-09-10T11:50:53Z
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@ErikUden My uncle had MS, so it's interesting to read. Thank you.Incidentally - it's normally spelt "multiple sclerosis" (not sklerosis) in English. That spelling might help those searching for it. #ms #multiplesclerosis
(DIR) Post #AlrM4rQ6sE4Tl5Ds3c by PrinzNando@mastodon.social
2024-09-10T11:58:33Z
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@ErikUden Take a deep breath and release slowly
(DIR) Post #AlrM9Vzrx5nelOAUmO by christopherbrown@mastodon.social
2024-09-10T11:59:22Z
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@ErikUden Three lumbar punctures!?! Yikes!
(DIR) Post #AlrMCsY6Ymm7Znmm1I by ErikUden@mastodon.de
2024-09-10T12:00:00Z
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okay, I'm gonna watch SpongeBob now, I had like a 13 minute blackout writing this last sence
(DIR) Post #AlrMOg78cQ96U8nZc8 by johnefrancis@mastodon.social
2024-09-10T12:02:07Z
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@ErikUden looking forward to an influx of neurosurgeons to thw fediverse. Thanks for that!
(DIR) Post #AlrMfgMUx0hWB05it6 by joshua@social.tupo.space
2024-09-10T12:05:12Z
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@ErikUden Will they at some point tell you whether you got the placebo or the real deal? 😄
(DIR) Post #AlrMmscBnCG2CorYGW by ErikUden@mastodon.de
2024-09-10T12:06:31Z
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im high as a kite
(DIR) Post #AlrN4MrEbWO0vOEsDI by ErikUden@mastodon.de
2024-09-10T12:09:41Z
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@joshua after this study is over (soonest at the 29th of November), however (!!) might take even until next year!!if my mind made this shit up I'm gonna be madI am so insanely high now, it took me minutes to focus on this and write this what the ...
(DIR) Post #AlrN52Cat0pj9VY0hM by atarifrosch@mastodon.de
2024-09-10T12:09:46Z
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@ErikUden So it's clear now that you are not getting the placebo.
(DIR) Post #AlrN7smqLgPCotrRdQ by guayabito@mastodon.cr
2024-09-10T12:10:16Z
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@ErikUden 🙏🙏🙏
(DIR) Post #AlrNExactETlk8WO2a by wronglang@bayes.club
2024-09-10T12:11:31Z
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@ErikUden 1) this is amazing; 2) thank you for your service
(DIR) Post #AlrNGfbgikJOY7pjPc by ErikUden@mastodon.de
2024-09-10T12:11:51Z
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@gabriel considering how I am feeling right now I will be extra mad if my mind just made it upthese doctors were super nice to me though, probably best place om earth to be trip sitted and have a panic attack yetI was pressing the panic button (which patients of mine even removed oh no I won't rat them out) and it worked well. I am glad I could remember how to use it.6 lives passed. Whilst writing this
(DIR) Post #AlrNNPuFUfWjsjjSNM by LightFIAR@med-mastodon.com
2024-09-10T12:13:05Z
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@ErikUden This is really an amazing and beautifully detailed account of your participation...and yep. Gutsy! Here's hoping there's some good clinical effect (even if this is just a PK study)!
(DIR) Post #AlrNORoRtIuo5HVjDk by ErikUden@mastodon.de
2024-09-10T12:13:19Z
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@atarifrosch let's hope my mind didn't just make this up. If I haven't posted anything about this until mid next year, it'll be clear that it was a placebo and it would've been too crazy to say my mind just made THIS up... I am so gone right now. If that just happens+? +out of nowhere?? Power of suggestion vsauce
(DIR) Post #AlrNRkGVk0ZkBOD1Hc by ErikUden@mastodon.de
2024-09-10T12:13:55Z
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@christopherbrown Y I K ES ECHOES YOUR SPINAL CORD!!
(DIR) Post #AlrNT9iAcPOVOMopyS by ErikUden@mastodon.de
2024-09-10T12:14:10Z
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@PrinzNando why am i laughing
(DIR) Post #AlrNWGpGcikSKGcjKa by ErikUden@mastodon.de
2024-09-10T12:14:43Z
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@james ohhh, I will change once I am back to earth
(DIR) Post #AlrNea2B5k50DRcoSG by jessew@mk.cpluspatch.com
2024-09-10T11:41:02.979Z
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@ErikUden@mastodon.de i'm boutta get perky on that RO7268489
(DIR) Post #AlrNeagEgo7eDgMntQ by ErikUden@mastodon.de
2024-09-10T12:16:06Z
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@jessew i will not steal you any of that RO7268489
(DIR) Post #AlrNgOntognhxsoVO4 by chiasm@mastodon.online
2024-09-10T12:16:32Z
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@ErikUden thank you for doing this!!
(DIR) Post #AlrNjgZQDYQvw3bp8y by ErikUden@mastodon.de
2024-09-10T12:17:09Z
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@christopherbrown I have to apologize
(DIR) Post #AlrNm2uO8TxHnMXd5s by charlybrown@troet.cafe
2024-09-10T12:17:33Z
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@ErikUden to much alcohol?
(DIR) Post #AlrNmdeNWy8LkQKrmC by jessew@mk.cpluspatch.com
2024-09-10T12:17:02.550Z
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@ErikUden@mastodon.de what if i give you ten dollars
(DIR) Post #AlrNmebZyrUMi2293I by ErikUden@mastodon.de
2024-09-10T12:17:34Z
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@jessew i should get off the Fediverse (fow now!! Do not worry, I will be back when I'm on earth)
(DIR) Post #AlrNrmarhtrqvu945Y by ErikUden@mastodon.de
2024-09-10T12:18:36Z
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@charlybrown sir, I have never drunken alwchol in my life,, ,
(DIR) Post #AlrO0vfPLHP1gBdCO8 by ErikUden@mastodon.de
2024-09-10T12:20:16Z
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i am laughing at my own jokes in this thread iiii
(DIR) Post #AlrO7MDBYuuFkCUnIG by ErikUden@mastodon.de
2024-09-10T12:21:26Z
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Okay, I'm gonna go back for real now !!
(DIR) Post #AlrOJUN735fkWkvLAe by BeAware@social.beaware.live
2024-09-10T12:23:33Z
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@ErikUden on a scale from 1-3, how many slightly touching buttholes do you have in your username?Just checking to see how high you are.😝Hope your research is going okay.🫡
(DIR) Post #AlrOWOXk1xWKDO37o0 by ErikUden@mastodon.de
2024-09-10T12:25:57Z
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@BeAware mmmmm.... it's the fediverse symbol, not “buttholes” 🤓🤓🤓☝️☝️
(DIR) Post #AlrOiIucnAKcE4Qovw by STimmchen@mastodon.de
2024-09-10T12:28:05Z
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@ErikUden @BeAware One finger missing...
(DIR) Post #AlrOsCIwDN0uczWOR6 by BeAware@social.beaware.live
2024-09-10T12:29:53Z
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@ErikUden not high enough, get more high and the buttholes will appear.😝Although, theres plenty of buttholes that appear on Fedi sometimes.😂
(DIR) Post #AlrPAAl8hLUX33He3U by LillyHerself@mastodon.social
2024-09-10T12:33:06Z
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@ErikUden Did you ever have Epstein-Barr (EBV) when you were younger? I have read that it can be a trigger for MS.
(DIR) Post #AlrPBH3alkekryRLG4 by Crispius@mstdn.crispius.ca
2024-09-10T12:33:01Z
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@ErikUden I hope it goes well for you, Erik.
(DIR) Post #AlrPCNOsfc5cpgvIsi by harkank@chaos.social
2024-09-10T12:33:31Z
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@ErikUden I can feel you, man. =;)Congrats, you seemingly have your first good day after a row of bad ones.
(DIR) Post #AlrQPHtGZDmLSkr8zY by ErikUden@mastodon.de
2024-09-10T12:47:04Z
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i kept thinking “why is he staring at me” (from outside my focus point vision) and “the doctor” already left and it was just a device standing next to me that looked like him
(DIR) Post #AlrQdJKG1kiJy7ATD6 by pochitoque@sivar.cafe
2024-09-10T12:49:35Z
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@ErikUden Good morning/afternoon Mr, how about a cup of hot cocoa to make sure that whatever was "starting at you" smile when you are enjoying the cocoa....
(DIR) Post #AlrQkNUKwv1ouDFhjM by ErikUden@mastodon.de
2024-09-10T12:50:54Z
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ok i may be high but the physician wasn't here “after just 10 Minutes” meow
(DIR) Post #AlrQlM5ddMW6rHALCa by LillyHerself@mastodon.social
2024-09-10T12:51:01Z
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@ErikUden A bit scary that they were making such mistakes!
(DIR) Post #AlrQwaaY4KnF0gyr0i by goblin@social.tchncs.de
2024-09-10T12:53:05Z
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@ErikUden I once got a lumbar puncture and it hurt like sh** for two days and still a bit for three weeks, but afterwards it was fine.Thanks for your service towards science and ms patients 🫡
(DIR) Post #AlrR1b1tr8rtpIA4gK by ErikUden@mastodon.de
2024-09-10T12:54:00Z
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@goblin let's go round 2 on the 12th of september
(DIR) Post #AlrR29WDcvK4nAbley by pochitoque@sivar.cafe
2024-09-10T12:54:01Z
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@ErikUden enjoy the ride Mr.
(DIR) Post #AlrRUT0MlrEDKtD7o0 by scobiform@fedi.freakshit.org
2024-09-10T12:59:11Z
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@ErikUden :catroll:
(DIR) Post #AlrS7KE9L8dhPFBeF6 by DebErupts@mastodon.social
2024-09-10T13:06:12Z
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@ErikUden Thank you for volunteering for this study. Looks like quite a commitment.
(DIR) Post #AlrTXIEPTzWEhRFrqy by brewbart@troet.cafe
2024-09-10T13:22:07Z
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@ErikUden Time is relative. Not only to speed but also especially to the fact whether you're important or not. The more important you are the less time 10 minutes really are ;) also the less you get done in 10 minutes because the things whirling around your head exponentially increase with your importance
(DIR) Post #AlrTuUyuFF96u44IyG by ganbatte@ohai.social
2024-09-10T13:26:19Z
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@ErikUden would be interested to know how music from the eels sounds like to you right now.also the song schizophren from die fantastischen vier.music from fela kuti and some relaxation music.
(DIR) Post #AlrUfmBK71cxrLQ6ka by flowerpot@mas.to
2024-09-10T13:34:52Z
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I am in awe of your commitment to document this entire process, and I applaud it. This will literally be one for the history books. Also, meow.
(DIR) Post #AlrVnx05s6vtgUd4oi by nophen@kafeneio.social
2024-09-10T13:47:32Z
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@ErikUden you'll be fine, just remember the first rule of psychedelics: "you cannot fly".
(DIR) Post #AlrWgThCWlkeiynEGm by cpm@spore.social
2024-09-10T13:57:23Z
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@ErikUdenthat's not in the brochure!
(DIR) Post #AlrYCE9rvo4VkwuBrU by ErikUden@mastodon.de
2024-09-10T14:14:22Z
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the investigator is currently in a meeting, which is why he will come “later than usual”. ok. I guess “patient turned into hamster” isn't a reason to reschedule meetings
(DIR) Post #AlrYMOkVPRiFV0tLQu by ErikUden@mastodon.de
2024-09-10T14:16:11Z
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@nophen “You cannot fly” must be looking really silly right now because im obviously flying through this hospital, sir
(DIR) Post #AlrZ5k1NAQS4VLP0UK by Pentropy@lazysocial.de
2024-09-10T14:24:22Z
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@ErikUden iz i can haz cheezburglars pwease? want some of that stuff too! can you sneak some out for me? pwetty much pweaaaaseeee!!!??? 🤣
(DIR) Post #Alrc1iaCs7smkST87M by nophen@kafeneio.social
2024-09-10T14:57:16Z
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@ErikUden oh my goodness, has it started?! then please stick to the second rule: "do not take your clothes off as this might attract unwanted attention". hopefully you will fly unnoticed and land safely.
(DIR) Post #AlrggnUDwfd7e6Vvd2 by guayabito@mastodon.cr
2024-09-10T15:49:29Z
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@ErikUden 😂😂😂😂
(DIR) Post #AlrnDpTSAy7n5jHtqa by ErikUden@mastodon.de
2024-09-10T17:02:44Z
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i was the canary. after my symptoms happened, 3 other people of my group experienced having similar weed-like effects. I can't imagine what taking 10 times this much stuff causes (the initial study was 6mg, now we're at 0.6mg).
(DIR) Post #AlrnYGyRdqkCAkX2Ya by ErikUden@mastodon.de
2024-09-10T17:06:25Z
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this day was 4 months long and lasted 13 seconds
(DIR) Post #Alrni7zdt1kPDOn7ke by garpu@mastodon.online
2024-09-10T17:08:11Z
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@ErikUden I haven't partaken myself, but that sounds more like shrooms. LOL. The heck did they give you? :)
(DIR) Post #Alro6bLkOJnvDFnhJo by ErikUden@mastodon.de
2024-09-10T17:12:37Z
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(DIR) Post #AlroA9oOibRSxotgWG by _maleficentgirl@troet.cafe
2024-09-10T17:13:13Z
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@ErikUden whelp now you definitely know who'S getting the placebos and who's on the real deal ... unless the placebos are getting actual weed 🤔
(DIR) Post #AlroAlaYGWwg7siADI by ErikUden@mastodon.de
2024-09-10T17:13:18Z
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(DIR) Post #AlroOSeTT7XnRu4mhM by ErikUden@mastodon.de
2024-09-10T17:15:51Z
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@garpu experimental, only tested on 73 people globally, RO7268489. It hits different.
(DIR) Post #Alrq1JQ9p4W04GT916 by generika@bananachips.club
2024-09-10T17:33:59Z
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@ErikUden this is an admirable and hilarious journey!
(DIR) Post #AlrqDOmNj4KqA5cy92 by ErikUden@mastodon.de
2024-09-10T17:36:16Z
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I saw spongebob to calm down, this scene came up and I thought “this is absolutely how I am feeling right now”
(DIR) Post #AlrqcYN9CF4h9ZoqOW by ErikUden@mastodon.de
2024-09-10T17:40:46Z
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Here's the deal, last statement for Mastodon for this evening: the compound is given daily in 0.6mg per dose. This study is supposed to check how quickly the body dissolves this compound and for how long it stays. This means it is currently not known what the half time for it is, or when we can expect such side-effects to end! We are just given a dose daily, and there is a good chance we are increasing its level daily.In case I do not continue writing in my previous very clear and coordinated style, I will probably have a prolonged feeling like this. Multiple doctors asked whether I wanted to end the study as a result of what happened today. I will have to decide. I am very much certain, however, that I will be better prepared tomorrow, so it won't hit me unexpectedly.We will see!! Tomorrow is a new day ^ ^
(DIR) Post #AlrqgX9teQEqY0WFX6 by ErikUden@mastodon.de
2024-09-10T17:41:26Z
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@multisn8 I am at 80% of what I would call the strongest effects of today. It doesn't really seem to go lower than this before the evening.
(DIR) Post #AlrqjygXlRuimwQpUW by roknrol@beige.party
2024-09-10T17:42:06Z
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@ErikUden Good luck! Sounds like a fun ride if you're prepared for it.
(DIR) Post #AlrqksOOe6fjYsN7yq by harkank@chaos.social
2024-09-10T17:42:17Z
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@ErikUden Could you pse tell the name of this drug? Not asking for myself =;). And not kidding now.Asking for my poor neighbour who had to go to a rehab center a few days ago. He is battling the same disease MS you are currently hospitalized for, if I got your thread right.
(DIR) Post #Alrqm2rdCMq2KObUXo by ErikUden@mastodon.de
2024-09-10T17:42:20Z
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@multisn8 I am okay!! I feel very safe here and know that especially when I have to press the alarm button many will come and help. Next time I'd know what is ahead of me. :]
(DIR) Post #AlrqxKP8K9yDuiecJE by Christo_459@mastodon.me.uk
2024-09-10T17:44:31Z
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@ErikUden One day at a time Erik. Good luck tomorrow x
(DIR) Post #AlrrPjvyzxbPCYZDV2 by ErikUden@mastodon.de
2024-09-10T17:49:42Z
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@harkank the compound name. Is RO7268489, it has only been administered to 73 people in the world right now. I know that my study is one of five, some must've checked the effect on some MS patient as of yet. I am only part of the group of completely healthy non-MS patients to see its effects beyond that.My study is one that will lead to possible approval by EU legislators. It may become the cure for MS patients. It may not be any of that. Even if all things in my study go successfully, getting a drug that is entirely new, does a completely new thing no other medication of this type has done, and isn't allowed by any country (like the USA with the FDA), accepted, is very hard. The process may take many years. However, I will ask some of the people who know more about the study, whether a study with MS patients is planned. I would just like to say that I am not a medical expert, and also would I really not want to recommend some medicine that is barely tested on humans. If you inform yourself or your neighbor does so, it may be that this compound is tested. But again, one must truly understand the possible side effects and what you're signing up for before doing so, as nothing can be guaranteed and everything could be lost.I will ask about it, though ^ ^
(DIR) Post #AlrrqXzJWRnXyAuLR2 by garpu@mastodon.online
2024-09-10T17:54:32Z
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@ErikUden oh wow!
(DIR) Post #Alrrukv5NsUvEdw9a4 by nshr@hhsocial.de
2024-09-10T17:55:17Z
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@ErikUden I guess we can be sure now that you are NOT in the placebo group 🤡
(DIR) Post #AlrsCM8yEurDbdp9Bw by ErikUden@mastodon.de
2024-09-10T17:58:29Z
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@nshr there is this one girl (the only one in the group as of yet) who has never experienced any symptoms, whilst EVERYONE is high the entire evening. People had good fun with us at the shared dining table.On the one side, it's pretty sus of her to not have any symptoms, making her our top subject for having the placebo.On the other hand, she's the only woman in this entire “73 people who ever had this medicine” group. It would be kinda messed up she got the placebo, because then this drug would've never been tested on women. As I said, very early stage.
(DIR) Post #AlrtX2sx8XPzuelFWy by scobiform@fedi.freakshit.org
2024-09-10T18:13:22Z
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@ErikUden Do you deliver to Berlin? This sounds interesting. :neocat_laugh: Wishing you all the best for your recovery
(DIR) Post #Alrth724ZZU1fdpLNY by FlotteBiene86@nrw.social
2024-09-10T18:15:14Z
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@ErikUden Oh no :(
(DIR) Post #AlrtnuUfadVcoFRcu0 by FlotteBiene86@nrw.social
2024-09-10T18:16:28Z
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@ErikUden Better than a panic attack :)
(DIR) Post #Alru1wQVCV78rGBaC0 by FlotteBiene86@nrw.social
2024-09-10T18:19:00Z
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@ErikUden Maybe they think about lowering the dose... I hope it also shows positive effects on your body.
(DIR) Post #AlruiQoKcfFhFvao1g by harkank@chaos.social
2024-09-10T18:26:40Z
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@ErikUden Ok, got it. kilo tnx for this solid explanation. Oh boy, thats a truly experimental set up. Guts of steel needed to undergo such. Wishing you the best of luck for your next flyover and a smooth landing for the night =;)To support that: here is a psychedelic lullaby from an era when interesting drugs & the wah-wahs were invented https://www.youtube.com/watch?v=GpGEeneO-t0
(DIR) Post #Als0wr9e4bj2jrp7S4 by FrauSchlumpf@det.social
2024-09-10T19:31:13Z
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@nshr @ErikUden Well, imagine if he actually was in the placebo group 🤭
(DIR) Post #Als0wsDw68kg3Sq3mK by ErikUden@mastodon.de
2024-09-10T19:36:31Z
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@FrauSchlumpf @nshr most embarrassing thing ever. I would simply stop posting forever.
(DIR) Post #Als3nFWotgF7Icm2s4 by Beedazzled@mastodon.green
2024-09-10T20:08:23Z
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@ErikUden @nshr you are a very brave man to do this to benefit others
(DIR) Post #AlsAc0cmfU8BZO9PfM by noondlyt@hellions.cloud
2024-09-10T21:24:48Z
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@ErikUden amazing sentence
(DIR) Post #AlsAk9XFQElTWSRceG by noondlyt@hellions.cloud
2024-09-10T21:26:16Z
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@ErikUden This pretty much guarantees you're not in placebo group, correct?
(DIR) Post #AlsJaWmN2vTMIu0Gxs by guayabito@mastodon.cr
2024-09-10T23:05:21Z
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@ErikUden I hope everything will work out for you 🙏🙏🙏
(DIR) Post #AlsVX0HwaY3K7IrERc by PrinzNando@mastodon.social
2024-09-11T01:19:11Z
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@ErikUden oh hahaha it's right Hahahah
(DIR) Post #Alsuam2Y0FiJwGYBxQ by ErikUden@mastodon.de
2024-09-11T06:00:00Z
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@noondlyt let's hope. I would be ashamed and rightfully shunned from the Fediverse forever if I just made up these effects in my mind and spammed the entire network for no reason.
(DIR) Post #Alsup6Dvl2SAaihozA by ErikUden@mastodon.de
2024-09-11T06:02:36Z
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@Beedazzled @nshr well, to be fair, I am getting compensated for participating. As much as I'd love to present the altruistic image that I am so selflessly helping others, it would not be the truth. I am getting money out of this, what drew me to this study in particular, however, were my friends who suffer from MS.
(DIR) Post #AlsvMEeXRIBiI2x4cq by noondlyt@hellions.cloud
2024-09-11T06:08:35Z
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@ErikUden Oh no, it would still be fascinating 🙂
(DIR) Post #AlszGxAlP1DuRdlI2a by Sofie_unlabeled@chaos.social
2024-09-11T06:52:26Z
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@ErikUden Okay, Ihave not read all, because the time. But what I read reminded me very much of my long hospital stay because of my serious illness, which escalated 10 years ago. I have had lumbar punctures several times and have never experienced such a luxurious treatment. I would probably have to do a study on that, I don't know, or it's just the German hospital conditions. I have more than one experience.I could never do something like that because I'm like that
(DIR) Post #Alt1klz9lDeoLOgBW4 by Beedazzled@mastodon.green
2024-09-11T07:20:14Z
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@ErikUden @nshr most people wouldn't do it for £1m
(DIR) Post #AltMQeHulfuViUhNmy by ErikUden@mastodon.de
2024-09-11T11:11:55Z
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(DIR) Post #AltNYhohdDfkvqROM4 by johnefrancis@mastodon.social
2024-09-11T11:24:34Z
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@ErikUden I think if you discover the semi-permanent weed high then you should win the highest award for experimental subjects.
(DIR) Post #AltVphIVcAUNsTzmxE by syphilia@kafeneio.social
2024-09-11T12:57:16Z
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@ErikUden I'm looking forward to the day that stuff is free for everyone to use!
(DIR) Post #AltoVSJpUfYkl9fuDI by Pentropy@lazysocial.de
2024-09-11T16:26:20Z
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@ErikUden who would have thought that this nightmare would become an aesthetical ideal some day... in the weed community growing a strong horizontal stem to have branches with flowers growing straight upwards is quite common. for those who don't enjoy weed: this also works with basil. but it doesn't work with mint as mint just grows as it pleases, so mint is weedier than weed 🤣 First picture is an early stage of a weed plant, you can already see the shape.The second picture shows the branches of a dead plant which grew like the tree but in a single direction without early split
(DIR) Post #Altr6kCq9TnGrJJWfQ by young_ullrich@norden.social
2024-09-11T16:55:40Z
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@ErikUden deutsche hegel
(DIR) Post #AltryStsi6qmp73v4i by SeniorFreddo@mastodon.world
2024-09-11T17:05:20Z
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@ErikUden I can't find anything on that substance, do you maybe have the trivial name for that substance, the chemical structure or a phase 1 or 2 study
(DIR) Post #AltveJw8j7fn33lhPk by ErikUden@mastodon.de
2024-09-11T17:46:34Z
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@SeniorFreddo Hm. I can find a few results on Google? I can scan the documents they gave me and send them to you :]
(DIR) Post #AltvqkXJeivn1L5GGO by SeniorFreddo@mastodon.world
2024-09-11T17:48:49Z
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@ErikUden nice thx
(DIR) Post #AlvjumJ6CiJAXLVa52 by catflyhigh@troet.cafe
2024-09-12T14:44:29Z
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@ErikUden Wie ist das nun weitergegangen? Hast du abgebrochen oder ist es schon fertig oder bist du noch dort und schreibst nur nix mehr drüber?
(DIR) Post #AlvkeonxFYmpbVtWPQ by ErikUden@mastodon.de
2024-09-12T14:52:50Z
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@catflyhigh Ich habe irgendwie am Nachmittag nicht mehr die Klarheit um weiter zu schreiben! Es ging aber heute z.B. sehr viel besser als Gestern :]
(DIR) Post #Alvmmr6Qn1XmxLUri4 by catflyhigh@troet.cafe
2024-09-12T15:16:34Z
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@ErikUden Ah ok, na dann warte ich auf die Nachberichtserstattung, die ja bestimmt noch kommt. Lass dir Zeit und pass auf dich auf.
(DIR) Post #AlvxccXRBTFmNxS1dQ by ErikUden@mastodon.de
2024-09-12T17:18:05Z
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Everything from this point on, unless otherwise specified, was written two days later!My Side-Effects from the Event12:30-13:10 Panic Attack 12:30-15:30 Severe Disorientation12:30-15:30 Nausea12:30-15:30 Sense of Time being weird12:30-15:30 Hyperfocus 12:30-15:30 Hypersensibility12:30-15:30 Constantly Distracted / not focused12:30-14:30 Not able to speak / finish sentences12:30-15:30 Less impulse control12:30-15:30 Long thinking breaks 13:15-14:00 Felt like a HamsterAfter the mentioned ending times of each side effect (except for the panic attack), the effect continued, but decreased throughout the day. At 17:30, it felt 80% as strong as 12:30 when everything started. By the next morning (of 009) I didn't feel hungover, I felt the effects 30% as strong as when it started.My Notes for the EventFirst of all, yes, the “I am currently having a panic attack” post was made during a panic attack. My initial response after calming down a small amount, lying on my bed, surrounded by doctors going all around, was look at my phone to “calm down”, however I got the sudden urge to post to Mastodon about this. It was a (working) distraction. I don't quite understand what my goal of the “Gigachad” meme was, or why I put it there. I just suddenly thought of that image in my head and couldn't stop laughing, as if it was the best joke I've ever heard. I don't even know what this is supposed to mean, it's “based” to have a panic attack? “but I'm posting on Mastodon despite all this” mindset? Where was the joke here? I guess it was the juxtaposition of something so serious paired with an image giving off more meme vibes.Regardless, that same day, when things calmed down, the physician (often presented as the highest authority on the study) asked me to E-Mail him an exact description of my experience. Whilst still high and recovering from it, I've written the following text for over an hour! I have titled some segments to make it easier to read through... How and When Everything HappenedAt around 11:00 AM, when I was sitting in the study room, I noticed larger side effects than usual (higher dizziness, more nausea). I just finished a work meeting (which started 10:00 AM), with zero side effects or weird feelings. The dizziness slowly came and got stronger, but I ignored it or didn't care to notice it, because I've had softer versions of these side effects the days before and it was never a big deal. After day one of the compound, the side effects completely vanished for me, which is in a stark contrast to my colleagues who have experienced quite strong symptoms of “being high” just the day prior. I would make a few more slip ups during my work because of this feeling, but I didn't think much of it.At exactly 12:30, my mother had sent a picture of our cats into the family group chat. This was the moment where a large wave of this effect hit me. I looked at the picture of cats and was both concentrated and distracted from the image, that I didn't even feel anything around me disappearing. If it wasn't in my immediate vision, it was simply not part of my reality. Some impulse driving me to continue working got ahold of me, so wanted to turn back to my laptop. To be continued
(DIR) Post #AlvyANHWPl98uh6MuO by ErikUden@mastodon.de
2024-09-12T17:24:12Z
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Content Warning: Needles, and drug related medical stuff (panic attacks)How and Why Everything HappenedContinuationHowever, after looking away from the picture of cats, I felt like a long time passed. I was disoriented, because for some reason I believed I was with the cats (back in our home). I also had the sudden realization we got these cats 4 years ago. For some reason, I remember feeling as if we just got the cats, but the logic part of me heavily contradicted that position. That made me scared and panic, because one moment to the next I felt as if I've forgotten the last four years of my life. For some reason, my sense of time was completely lost. The hyperfocus on the images of my cats lead to me forgetting that I was at an ICON facility. I stood around and panicked, because I felt like I was teleported from my home to ICON in Groningen, and the past four years got simply inserted into my memory, but never really happened? For a moment I didn't know why I was here or what is going on. I was still sitting in a chair in the study room in this moment, so I got up.I noticed that something was not right, and everything around me became more and more surreal. I thought that I am maybe dreaming, as things became blurry. I distinctly remember that I had to convince myself that this is real, but that something was going very wrong. I stopped understanding much that was going on, but realized when going to the assistant's room that I had frequent black-outs (without fainting, or falling, of course), meaning there were / are holes in my memory. Everything feels blurry and I can only remember a few sparks of memories inbetween events, after this paragraph.I felt like I just started walking to the assistant's room next to the laundry room on the other side of the building, but suddenly I've found myself there, with no memory of walking. I knocked on the door, nobody opened. I walked back to my bed (13), a maximum of 5 minutes could only had passed since I began feeling like this, most likely even less. I kept thinking that it was much longer, because to me so many things have happened that certainly more time must've passed.When a much stronger version of dizziness, light headedness, and general loss of control, came over me, my first instinct was to press the alarm / emergency button on my wristband (whilst standing in front of my bed in my room). I could hold myself upwards, and when the assistant came in and asked “is there an emergency, or is everything fine?” (most likely perplexed as to her I was just standing there like a normal person, but to me hell was loose). I told her that I wasn't okay and I needed help.In the first 20 minutes of assistants arriving, helping me, doing blood pressure, heart rate, etc. tests to see why my state of being has come, I felt the effects much stronger, especially because I was lying on my bed instead of moving or standing up right, which made me sink into another world more swiftly. I felt like there was a cut and suddenly many people appeared. As if the past minutes were sped up. I immediately wanted to explain the situation and began talking about my symptoms and describing them in as good as detail as I could. I distinctly remember that I felt very competent in talking. I did stumble a lot, but still described my symptoms very accurately. I felt detached from my outside. In my mind, everything was going over and under, but when speaking it seemed like everything was okay. I masked my real emotions in that moment, meaning I was still in control and capable of doing that.Not only did I have trouble staying focused, I often forgot what I was doing and what was going on and began having long breaks inbetween sentences), but I also had trouble ending my sentences. Some words would simply miss from my dictionary. I often just said German words in English sentences.To be continued
(DIR) Post #AlvyNMNj4VQTt3CBqC by ErikUden@mastodon.de
2024-09-12T17:26:32Z
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Content Warning: Needles, and drug related medical stuff (panic attacks)How and Why Everything HappenedContinuationThe feeling of surrealism was stronger now, and breathing in through the nose and out of my mouth also helped staying focused. I've asked for wet towels around my wrist and neck, which brought me much closer to reality. I was very scared in that initial moment and everything that happened later, for the same reason, or curtesy of, my panic attack.I kept trying to explain what happened, I probably repeated myself 3-4 times. The doctors and assistants always listened well and sometimes noted things down. For some time I believed that I could speak Dutch because I thought I understood the assistants.I would have waves of clearness or waves of further fear and further loss of control. I felt it coming from my upper stomach, but the assistants helped me to calm down.When I suggested the idea of “it would be embarrassing if I had the placebo, because then my mind just made this up”, the assistants reassured me that whether caused by the placebo or by the real medicine, what I'm experiencing is real.I also said that I found my own voice weird or annoying and felt like I was talking in a weird way. I also thought everything sounded “weird”.My initial experience with this happening was feeling overstimulated, hyperfixated, that I could both forget or oversee a person talking directly to me, and sometimes the quiet chatter from the room next door was the loudest thing I've heard. When I've been given my lunch (13:10), I had trouble eating it. I would either forget that it was there, or after finishing to make a bread, it felt like hours had passed. My feeling of time was gone.When starting to eat a slice of bread, I would believe that hours had passed, but when looking back at my bread, I saw the bread was still there and I barely ate any of it. I would sometimes look at the bread, having forgotten what I've done or why I am doing this. The motoric task of putting a topping like butter on my bread was very hard.Every feeling or emotion I had, I felt much stronger. When an assistant was noting something down at the front of the bed, I could feel it shiver from my legs to my hands, despite in a normal environment, the slight disturbance of a pen writing something wouldn't feel like the bed was shaking. Additionally, my fear was increased tenfold, the pain I felt from the sting to measure my blood sugar felt a lot worse, and when I laughed, I wouldn't stop for minutes on end.As I had mentioned at sometime during eating lunch that I “feel like a hamster”, the assistants joked that they'll now have to write that as one of the side effects of the medicine, and when I laughed about that joke I couldn't stop. The feeling was mich increased. The feeling of being a hamster came from the idea that my eating must be looking silly, because when I observed myself I saw that I didn't have the motor skills to easily and swiftly make a bread. I found it funny, sitting there eating a piece of bread like a hamster. I imagined myself being that, or thought people must perceive me this way.I never had any hallucinations or visual things happening outside of my mind. When I closed my eyes the effects would become stronger and I would see whatever my mind came up with. With my eyes opened I would sometimes be sent back to some idea / memory causing my concentration or line of thought to be broken, and me stumbling over words or having to stop talking altogether.At many given moments I felt like I could escape this if I very much tried and did everything I could to fight it and stay focused. When standing up right, moving, etc. I would initially often feel like it was gone for a moment, only for it to return later or overwhelm me once more.To be continued
(DIR) Post #AlvyYexOLjsogNGYcK by ErikUden@mastodon.de
2024-09-12T17:28:35Z
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Content Warning: Needles, and drug related medical stuff (panic attacks)How and Why Everything HappenedContinuationAn assistant put wet towels on my wrists and my neck, which pulled me further into reality. I knew a bit about these things and talked about hot chili bonbons, or a cold liquid for your forehead, or “center shocks” (candy), or ammonium which helps you wake up and come back to reality.I also felt incredibly hungry soon afterwards. At the time of the afternoon snack I had two pears, which didn't suffice.I also distracted myself by watching a calm and humorous TV show, but couldn't even finish one episode as my mind would always wander off, wanting to open other apps or writing people. I would basically have a worse impulse control. When I had the idea that I should do something (like write an E-mail) I would immediately do it, and on my way forget what I wanted to do, and then slowly later realize that I watched a TV show and wanted to do that.When the permanent observation by the assistant ended as I was feeling a lot more safe with what is occurring, it took me about 10 minutes to realize that he disappeared (despite him saying goodbye and explaining everything to me).During writing this at 17:32 I feel like a heavy weight was put on me. It stopped after a few minutes.The one problem I am seeing is that as of now (18:20) I only feel like the effect is 80% as high as during the beginning at 12:30. So it's still very high, despite a lot of time passing. I have figured out a way to deal with it, however! Similarities to first weed TripOur German viewers may remember this where I talked about my first experience with weed. What happened today is exactly the same experience I had when I had a panic attack due to the sudden side effects of ediblesAnother thing I would like to add next to my experience today was the same as my experience of taking Marihuana for the first time. I had a very bad trip with a panic attack which worked almost exactly as what happened today. A few years ago when I was taking weed for the first (out of 4) time(s), I was overwhelmed by the swift realization that something happened; I lost control over my thoughts and concentration from one moment to the next, and I began panicking. I must've had a very similar panic attack back then, as the way I experienced it today. It feels very much the same as a “bad trip” starting with a panic attack.I may be placebo?(for some reason I was worried about the embarrassment of this happening on a placebo dose, it's 100% confirmed I have the compound, as three other people have the same symptoms, but one other person never felt anything. I could imagine my mind doing a lot, but waking up to feeling still high, that would be impossible) However, the entire thing may also be the power of suggestion. I was very interested in this study, even talked to you how some of the compound works. I've been thinking and saying that this compound must have similar effects to weed as it does something to the cannabinoid receptors. For the first day of the dose, I even experienced very light symptoms of that happening (a “good” trip). However, the first day we were also tested all day long and had to lie down a lot. The following days I didn't feel much except for dizziness and light headedness. The fact I was so overwhelmed today has a lot to do with the fact that the past days I never experienced anything like this, and hence expected the symptoms to be less and less each day. Maybe this won't ever happen again, maybe this state is now normal? We will not know.To be continued
(DIR) Post #AlvzAPwyanX3904mTw by DebErupts@mastodon.social
2024-09-12T17:35:22Z
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@ErikUden Sounds good. Let's put it on the market. 😆
(DIR) Post #Alvzoib4gRsIYk34nA by ErikUden@mastodon.de
2024-09-12T17:42:41Z
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Content Warning: Needles, and drug related medical stuff (panic attacks)I may be placebo?ContinuationWhat I'm trying to say here is that I heard that the previous day, three of the other members of this study felt very high during the afternoon. I didn't keep thinking about it, but I knew about it. Maybe due to me thinking this is like Cannabis due to the receptors, and considering my first time with Marijuana was a panic attack similar to what happened today, I was merely suggested into these symptoms? I guess we could only know for sure after this study is over and it is revealed whether I had the placebo or not. If I did have the placebo, this study would be perfect for figuring out how someone can be suggested into going through what I am going through today. Yet, as the assistant's said, it's real to me either way.That's just the thing I personally keep thinking about, as it's very embarrassing if I'm describing all of this and it turns out I had no real medicine causing this? So I was suggested into this panic attack? I'm still thinking about this a lot.Please don't end the studyHowever, what I want to say as well is that I am still very happy with finishing this study! I think today the side effects were problematic, but the worst part was the panic attack induced by me not expecting something like this happening. Now that I am prepared, I would personally be too interested to see what happens after the next dose. I do not want to end the study, even if I had the same side effects tomorrow, I would probably deal with it better, maybe enjoy it, even, rather than being afraid of them, which was the problem.End of E-Mail segment.I guess that perfectly summarizes the event this day! The evening I was still 80% high, time passed weirdly, but I was no longer in shock about it.Also I didn't include the fact that this physician came very late after the event, because he was caught up in some meeting. Though, I must say, after the event and when initially met, I was his Number one attention. My morning wellbeings were now done with him directly. In the conversation I had with him, and after giving him my verdict of me wanting to continue this study, he told me that it was very medically safe to continue. When the doctors initially rushed to me since I sounded the alarm, they began doing all sorts of tests to figure out whether I was physically in some sort of danger, and I wasn't. Now knowing what would happen when I needed any help made me sure that I wanted to continue this study, despite these effects. I still had small moments of disorientation or other problems, but my concentration could fight against it and remind myself that everything was okay.Also... I wrote to my personal notes app at 21:33:Stroopwaffel is the best munchies foodIt was so true. I began trying to sleep at 23:00, and I was worried about one thing: what if I wake up tomorrow and still feel this high?That's it for this interesting day, folx! Let us hope something like this will not happen again :)
(DIR) Post #Alw0qfI23BZmpsdM5g by PKYo@poweredbygay.social
2024-09-12T17:54:14Z
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@ErikUden My grandma had an iron on which she baked the thin, crispy waffles that make up the sandwich that is a stroopwafel. But hers had a starburst or snowflake pattern, not a grid.Stroop = syrup = sirup.They were SO good.My grandparents died long ago and I don't know where that wafel iron ended up. I have spent decades buying commercially made stroopwafels.
(DIR) Post #Alw19dE7wdD9wJqqH2 by geos@toot.community
2024-09-12T17:57:38Z
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@ErikUdenYou are very brave to keep powering through. Thanks for documenting and sharing your experience. It is inspiring.
(DIR) Post #Alw29Xgsd0gQiuozwG by PKYo@poweredbygay.social
2024-09-12T18:08:51Z
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@ErikUden I don't drink, but once, at a work Christmas party, I DID have a drink.I got very dizzy (drunk?) so I got seated early.When the meal began, I thought I was doing a nonchalant job spreading butter on my bread bun. My colleague asked: "Are you OK?" I was very disappointed because I thought I was acting normally.A week later, she said it looked like I needed EVERY OUNCE of concentration I had for buttering. 🤣You're not on the placebo.
(DIR) Post #Alw2H6P1y44qPN4rjM by ErikUden@mastodon.de
2024-09-12T18:10:14Z
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Day 009 of the Multiple Sklerosis Study(Compound Day 6) Sunday on 2024-09-11Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack)My Schedule for Today07:30 Wellbeing (Pre dose) 08:40 ECG (3x measurements) 08:40 Vital signs (BP, HR) 08:55 Blood samplingPK: Sample 16Clinical chemistry (see SSL) 08:55 Transfer bloodtubes09:10 Breakfast (Start)09:40 Dose (RO7268489 or placebo) 09:40 Dose check09:40 Water fast (Start) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch15:30 Afternoon snack18:30 Dinner19:00 Wellbeing21:30 Evening snackMy Stats for Today(not personally recorded) My Notes for Today07:15 (written afterwards) I awoke with the sudden realization that I was still high. I woke up with about 30% of what I experienced the day prior - to me personally this strength was how I had positively used marihuana before. So, I woke up with a feeling that I would usually have when taking edibles. At that point I was fairly convinced I didn't have the placebo. 09:40 (written afterwards) Whilst still high on a level I'd usually only have when eating an edible, I took another one of the vials with this medicine. That would only lead to the concentration of RO7268489 in my blood. Obviously I would only get higher. 14:00 (written afterwards) My parents visited me and I showed them around. Still thinking that I'd be just as functioning here as anywhere else, as I did two days ago, I scheduled a work meeting on this very day. During / after the panic attack yesterday, I didn't think about canceling this event. I also didn't want to cancel it on the same day. That meant that I needed to do a business meeting whilst being on ~130% of the dose that made me have a panic attack yesterday. The meeting went okay, especially because I came clear at the end when everything was done and dusted. During the meeting, I would sometimes lose focus and was incapable of concentrating, I'd pause sometimes for a very long time, because I had a small blackout.16:00 (written afterwards)As my parents were gone, I got back to my bed and tried if I can work on some things, but even writing this report would've been too much. So, I just took it easy and calmed down.
(DIR) Post #AlwAbMwOzJMf7qrTZQ by ErikUden@mastodon.de
2024-09-12T19:43:32Z
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Day 010 of the Multiple Sclerosis Study(Compound Day 7) Thursday on 2024-09-12Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for Today07:15 Intravenous catheter (Insert) 07:30 ECG (3x measurements) 07:40 Wellbeing (Pre dose) 07:40 Vital signs08:05 Transfer bloodtubes08:05 Blood samplingPK: Sample 17PL PD 2-AG: Sample 106Expl BM: Sample 202SR PD 2-AG: Sample 309 08:10 CSF sampling PD CSF: Sample 502 Collection 2 08:10 Transfer CSF tubes08:10 Supervision Start category 2 for CSF sampling09:10 Supervision Stop category 2 for CSF sampling (1 hour after the CSF sampling of the last subject)09:10 Breakfast (Start on bed) 09:40 Dose (R07268489 or placebo) 09:40 Dase check09:40 Water fast (Start) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch15:00 Afternoon snack15:00 Intravenous catheter (Check) 17:30 Dinner19:00 Wellbeing20:30 Evening snack22:00 Intravenous catheter (Check)My Stats for Today07:15-Now No effects 08:10-Now increasing lower back pain (CSF) 20:40-21:33 Strong emotional outburstsMy Notes for Today~08:10 (written afterwards) I was just in there for two minutes. I had no shivering, no fear. They said I was done the moment I thought that the procedure annoyed me. The doctor used a thinner needle, a different procedure, and recommended I lie in bed longer in order to prevent headaches. I laid in bed not for one hour, but for three. 15:00Playing boardgames with my 4 study peers20:35This morning cannula sucks, they have to give me another one. I wanted to move this to the next day. 20:55I am crying real tears because the cannula just hurt a million times more. During the whole process I'd be super in pain and the assistant doing the cannula just stopped moving (whilst staying stationary in a hurting position) and asked me to calm down. I was breathing heavily and got super disoriented. I asked to have a moment beforehand to prepare myself, because I was feeling a bit hypersensitive, she didn't really understand and only said “I will warn you before the needle comes”. I was breathing so heavily saying it hurts, her reassurance was simply “calm down”. Both of my arms are hard to use now. I feel super disoriented and have trouble finding the words of what I want to say to the doctors. I've suddenly gotten this feeling that I'm being used? I felt so weird about myself. The way I was seeing my body detached from myself was very strong again, for those who rember. I've looked at my right arm, three small needle wounds and a bigger red dot which was from the previous cannula. I looked at my left arm and saw / felt the mess from this morning (blood went places inside my arm), as well as several needle wounds. This sudden and overwhelming feeling of everything being very wrong came over me. In that moment, I cried. The fact a small frustration feels like the saddest thing ever is why I cried. I can hence say that I still have strong effects. In the past, these side effects never interfered with medical actions. The following days will be interesting, because I have to cope with feeling everything more intense and dramatic. 21:08Other assistant's now telling me something with my new cannula is wrong again (it was hard to insert the salt solution, also my arm was numb after doing so. Please just do it tomorrow?? The drugs are letting me feel EVERYTHING, a lot more.21:33Ive calmed down a lot! I'll have a nice cup of sleep now, thx :))
(DIR) Post #AlwAtQwSqotmkNVLA8 by stephanie@ottawa.place
2024-09-12T19:46:47Z
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@ErikUden aww I'm sorry today was physically rough and that the person doing the procedure wasn't listening to you properly. I guess feeling like a hamster was better!
(DIR) Post #AlwB5UkyUg9m3Lsj6O by adipoeserPursch@troet.cafe
2024-09-12T19:48:58Z
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@ErikUden 💚🫂
(DIR) Post #AlwBhxDn6vjpL5hP04 by elala@nrw.social
2024-09-12T19:55:55Z
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@ErikUden Ich wünsche dir, dass dir der Schlaf etwas Erholung bringt.
(DIR) Post #AlwFwTjnPeFm3bqmYq by ErikUden@mastodon.de
2024-09-12T20:43:23Z
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@stephanie absolutely!! Tomorrow I will be a hamster once again ^ ^
(DIR) Post #AlwG2ZxhBTyN6BGDho by Ines64@mastodon.de
2024-09-12T20:44:28Z
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@ErikUden Ach Erik, du Ärmster. Und das an deinem heutigen Tag. ♥️.Ich wünsche dir eine gute Nacht und gute Erholung.
(DIR) Post #AlwGuh44zXYslX3Bwm by ErikUden@mastodon.de
2024-09-12T20:54:15Z
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@Ines64 das wird! Danke dir! ❤️
(DIR) Post #AlwHqL6omTMPSzoqPY by ErikUden@mastodon.de
2024-09-12T21:04:41Z
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@DebErupts HAHAHAHAHA, all of my weed friends asked me if I could steal some of this, but I have no chance. The vials are made with my name on them, just a day prior to eachdose administered, and then kept in secret facilities from that point.Some day this drug may be on the market, then I can proudly say I was the first one tripping on this, before it was cool! Haha.
(DIR) Post #AlxP16DnMkqpJh7WNM by ErikUden@mastodon.de
2024-09-13T09:59:45Z
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Day 011 of the Multiple Sclerosis Study(Compound Day 8) Friday on 2024-09-13Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study6:00 Telemetry, Connect6:30 Intravenous catheter (Check) 7:30 Wellbeing (Pre dose) 7:40 Urine clinical chemistry (Not sooner) 7:40 Physician taskNeurological examination Brief Psychiatric Rating Scale C-SSRS7:50 Telemetry (Start) 8:00 Telemetry (Start subject lay down [168h]) 8:10 Telemetry (Make ECG print [3x]) 8:15 Telemetry (Stop subject lay down [168h])8:15 Vital signs (BP, HR) 8:20 Blood sampling PK: Sample 18PL PD 2-AG: Sample 107 SR PD 2-AG: Sample 3108:20 Transfer bloodtubes 8:30 Cogstate (Neurocognitive Test Battery) 9:00 Urine collection Urinate into toiletStart container 49:10 SB Breakfast (Start) 9:40 Dose (RO7268489 or placebo) 9:40 Dose check9:40 Water fast (Start) 9:45 Blood sampling (PK: Sample 19) 9:45 Transfer bloodtubes9:50 Telemetry (Start subject lay down [168.5h])10:00 Telemetry (Make ECG print [3x] 10:05 Telemetry (Stop subject lay down [168.5h])10:05 Vital signs (BP, HR) 10:10 Blood samplingPK: Sample 20SR PD 2-AG: Sample 31110:10 Transfer bloodtubes10:20 Telemetry (Start subject lay down [169h])10:30 Telemetry (Make ECG print [3x])10:35 Telemetry (Stop subject lay down [169h])10:35 Vital signs (BP, HR) 10:40 Blood samplingPK: Sample 2110:40 Transfer bloodtubes11:10 Blood sampling (PK: Sample 22) 11:10 Transfer bloodtubes11:20 Telemetry (Start subject lay down [170h])11:30 Telemetry (Make ECG print [3x])11:35 Telemetry (Stop subject lay down [170h])11:35 Vital signs (BP, HR) 11:40 Blood samplingPK: Sample 23PL PD 2-AG: Sample 108SR PD 2-AG: Sample 31211:40 Transfer bloodtubes11:40 Water fast (Stop) 12:20 Telemetry (Start subject lay down [171h])12:30 Telemetry (Make ECG print [3x]) 12:35 Telemetry (Stop subject lay down [171h])12:35 Vital signs (BP, HR) 12:40 Blood sampling (PK: Sample 24) 12:40 Transfer bloodtubes12:40 Cogstate (Neurocognitive Test Battery) 13:20 Telemetry (Start subject lay down [172h]) 13:30 Telemetry (Make ECG print [3x])13:35 Telemetry (Stop subject lay down [172h])13:35 Vital signs (BP, HR) 13:40 Blood samplingPK: Sample 25PL PD 2-AG: Sample 109SR PD 2-AG: Sample 31313:40 Transfer bloodtubes13:40 SB Lunch (Check post dose restrictions) 15:00 Intravenous catheter (Check) 15:20 Telemetry (Start subject lay down [174h]) 15:30 Telemetry (Make ECG print [3x])15:35 Telemetry (Stop subject lay down [174h]) 15:35 Vital signs (BP, HR) 15:40 Blood sampling (PK: Sample 26) 15:40 Transfer bloodtubes15:40 Urine collectionStop container 4Start container 515:40 Transfer Urine containers16:15 Telemetry (Continue) 16:15 Urine collection (Continue) 17:40 Blood sampling (PK: Sample 27) 17:40 Transfer bloodtubes19:00 Wellbeing19:20 Telemetry (Start subject lay down [178h])19:30 Telemetry (Make ECG print [3x])19:35 Telemetry (Stop subject lay down [178h])19:35 Vital signs (BP, HR) 19:40 Blood samplingPK: Sample 28SR PD 2-AG: Sample 31419:40 Transfer bloodtubes19:40 SB Dinner21:20 Telemetry (Start subject lay down [180h])21:30 Telemetry (Make ECG print [3x])21:35 Telemetry (Stop subject lay down [180h]) 21:35 Vital signs (BP, HR) 21:40 Blood sampling (PK: Sample 29) 21:40 Transfer bloodtubes21:40 Urine collectionStop container 5Start container 621:40 Transfer Urine containers22:00 Intravenous catheter (Check) 23:15 Telemetry (Continue) 23:15 Urine collection (Continue)To be continued
(DIR) Post #AlxPonBsOezalwuzdQ by vwdasher@weird.autos
2024-09-13T10:08:44Z
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@ErikUden good luck, hope it goes well and painlessly for you!
(DIR) Post #AlxSzOJ5YOFge32MdM by molybdomantic@wandering.shop
2024-09-13T10:44:14Z
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@ErikUden Thank you for writing this up, it is fascinating. Also thank you SO SO SO much for being a guinea pig for this; I have MS and it is brave, selfless people like you who mean that people like me can live a better and less uncertain life. You are truly doing a service to humanity :-)
(DIR) Post #AlxVIMUaiwHqQaaiC8 by ErikUden@mastodon.de
2024-09-13T11:10:07Z
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My Stats for TodayWater intake: 5 (glasses, one tea, one compound)00:00 - Now increased back pain and discomfort.00:00 - Now Not able to sleep00:00 - Now Disorientation / hard to find words00:00 - Now muscle acheMy Notes for Today03:05 (written afterwards) I just got one paracetamol after explaining that I could not sleep at all. We've also talked about my side effects. 06:00 (written afterwards) Sadly, that didn't work out and I ended up not sleeping at all! It's not pain in my back, rather a slight discomfort when sitting in any way. The last lumbar puncture didn't have this, however, I believe these are the effects of the drug. 06:30 (written afterwards) My cannula feels so weird. Whenever blood gets drawn I can feel it, not just in pain, but also both in pressure and numbness. I can feel the cold salt solution whenever it is inserted. My arm gets nunb after it for 3-4 Minutes. The assistants said this was normal. Also, the vein hurts, even in places where the cannula isn't. They said this was okay. The medicine may cause such hypersensitivity? Although just retelling these events makes my body and the cannula feel weirder. It is all in le head. 12:57 They've taken my blood so many times today!! Vampires!!13:05My cannula tingles everywhere! Not hurting, just tingling. I almost burst out laughing despite it being an intravenous catheter that tickles me.
(DIR) Post #AlxW4yek8RH0gsWNSy by ErikUden@mastodon.de
2024-09-13T11:18:55Z
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@molybdomantic thank you,,, RO7268489 (for now) has my complete endorsement! It has strong weed-like effects :blobcatgooglyholdingitsheadinitshands:
(DIR) Post #AlxWjjyHdbP31G6AG8 by molybdomantic@wandering.shop
2024-09-13T11:26:15Z
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@ErikUden 😂
(DIR) Post #AlxX4Enwi5L8RG2M6a by chemoelectric@masto.ai
2024-09-13T11:29:57Z
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@ErikUden I hate being kept up all night by discomfort. It happens often because I have RLS and other minor but irritating problems.
(DIR) Post #AlxZR7YE2oz8VjitTE by MaierAmsden@mastodon.social
2024-09-13T11:56:31Z
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@ErikUden Watch your catheter dwell time - that's the biggest risk factor for thrombophlebitis. We rotated ours every 96 hours. (If they don't know when it was placed, that's a bad sign.) Check the insertion site (where the cannula enters the skin) for redness, tenderness, swelling and especially hardened cord-like and/or red streaked vein downstream of the insertion site (up your arm) or oozing of clear to white fluid from the insertion site.
(DIR) Post #AlxefwvcJywBgCYRQO by PKYo@poweredbygay.social
2024-09-13T12:55:11Z
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@ErikUden The last items you reported are reassuring. From 21:08 to 21:33, only 25 minutes from distressed to calm.You can do it!About feeling used: yes, this is what each of you volunteered to do. Do you mean you feel they're treating you like an object? This distancing may be how staff get through it, psychologically, when they know they are inflicting pain?A lot of people are thinking of you and reading what you're writing.You can do it! 💚💙⛑️⭐💜🦊
(DIR) Post #AlxzlPuO6DAc2sQaNE by ErikUden@mastodon.de
2024-09-13T16:51:31Z
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(DIR) Post #AlxzqqrtI6Pd6iqqlk by adipoeserPursch@troet.cafe
2024-09-13T16:52:29Z
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@ErikUden AAAACCCIIIIIIIIID! 😁
(DIR) Post #Aly1ahkJdgeS5fjiqm by acmeworks@social.tchncs.de
2024-09-13T17:11:58Z
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@ErikUden You're getting caught in rather decent works of art at least. Imagine being in some kitschy shite. Or - rather don't.
(DIR) Post #AlyQNhXnZmfMYOmISm by FrauSchlumpf@det.social
2024-09-13T21:49:44Z
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@ErikUden I don’t think it would be embarrassing at all if you had the placebo. I‘d find it fascinating to see what our mind is capable of. I mean it’s not like you made this up. As the nurse said, what you felt was real and that’s all that matters. It’s well known that placebos can have a strong effect - hell, it’s what homeopathy is based on!Nobody is judging you. And I think it’s really brave of you to continue with the study! 👏
(DIR) Post #Alz8H0MVbphWsA79iC by SchwarzeLocke@ohai.social
2024-09-14T06:01:34Z
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@ErikUden what I am wondering: it seems there was not much time between arriving and getting the first dose. Wouldn't it be better to have a day or two just to get used to the setting, new daily routine and being monitored closely, in order to acclimate and get each patients baseline? I assume that I would be very stressed just from the setting, screwing all of the actual measurements.
(DIR) Post #AlzMhaFqBQ6b4vYzeS by ErikUden@mastodon.de
2024-09-14T08:43:15Z
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Day 012 of the Multiple Sclerosis Study(Compound Day 9) Saturday on 2024-09-14Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study07:30 Wellbeing Pre dose08:30 Telemetry (Start subject lay down [192h])08:40 Telemetry (Make ECG print [3x]) 08:45 Telemetry (Stop subject lay down [192h])08:45 Vital signs (BP, HR) 08:55 Blood sampling PK: Sample 30PL PD 2-AG: Sample 110SR PD 2-AG: Sample 31508:55 Remove intravenous catheter 09:00 Transfer bloodtubes 09:00 Urine collection Stop container 6Stop collection 09:00 Transfer Urine containers 09:10 Breakfast (Start) 09:40 Dose (RO7268489 or placebo) 09:40 Dose check09:40 Water fast (Start) 09:40 Telemetry Stop Disconnect + Archive10:40 Intravenous catheter (Inspection) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch15:30 Afternoon snack18:30 Dinner19:00 Wellbeing21:30 Evening snackMy Stats for TodayWater intake: 4 (glasses, one tea, one compound)My Notes for Today06:15Y'all. I just woke up. I have NO negative side effects anymore (except for the mild ones)! I was able to sleep, my back doesn't hurt anymore, my arms are perfectly fine after the cannula was out. This is going to be a great day! Also I can finally have a shower :]
(DIR) Post #AlzUt3eA2jK73VvBDc by noondlyt@hellions.cloud
2024-09-14T10:14:57Z
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@ErikUden Very good 👏👏👏
(DIR) Post #AlzWDZsvzWyimqBDWa by syphilia@kafeneio.social
2024-09-14T10:29:52Z
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@ErikUden Thanks for the update - this looks good!
(DIR) Post #Am1RExtI74pW4f6o3U by ErikUden@mastodon.de
2024-09-15T08:43:32Z
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Day 013 of the Multiple Sclerosis Study(Compound Day 10) Sunday on 2024-09-15Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study07:30 Wellbeing (Pre dose) 08:40 ECG (3x) 08:40 Vital signs (BP, HR) 08:55 Blood sampling (PK: Sample 31) 08:55 Transfer bloodtubes09:10 Breakfast (Start) 09:40 Dose (RO7268489 or placebo) 09:40 Dose check09:40 Water fast (Start) 11:40 Water fast (Stop) 11:40 Morning snack13:10 Lunch15:30 Afternoon snack18:30 Dinner19:00 Wellbeing21:30 Evening snackMy Stats for TodayWater intake: 3 (glasses, one tea, one compound)Symptoms: none are severe :)My Notes for Today08:15 (written afterwards)I woke up so late... Which is a good thing! I looked at the clock and thought “wow, it's 7:30, I'm basically sleeping in”, like, I REALLY thought getting up at 7:30 would be LATE, because here it is. I kept sleeping and was eventually woken up at ~08:15. What a great day today will be!09:40 (written afterwards)I am always astonished by the rigorous procedure that this compound should be handled with. They need to compare the data from my wristband (about my identity) with the text on the vial that holds the compound. The moment I'm in the room they have to hold the vial up and in their hands the entire time, because even if the assistant simply places the vial on the table, they'd have to do the entire comparison again. They also keep the vial afterwards.
(DIR) Post #Am2TzWDDEXyguIiGMi by ErikUden@mastodon.de
2024-09-15T20:49:03Z
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when life gives you lemons,,,,
(DIR) Post #Am2VVu40Bpla6NPXTE by klyx@troet.cafe
2024-09-15T21:06:05Z
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@ErikUden I was not aware that you had MS (how should I though ;)). Thanks for participating in such a study. This is very important work. Of course, I also hope, that it helps you as well (at least if its not only water you get as med :D). Have a good one!
(DIR) Post #Am2WPzwpV0b0ZInv9s by PalmAndNeedle@norden.social
2024-09-15T21:16:15Z
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@ErikUden grog
(DIR) Post #Am2YZPXfuRYISiedOK by Ines64@mastodon.de
2024-09-15T21:40:22Z
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@ErikUden Sehr Tomatenlastig🍅
(DIR) Post #Am2c9z1vk7sUoVw8pc by Rhababerbarbar@tux.social
2024-09-15T22:20:34Z
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@ErikUdenOh my god, what a ride! I hope you are doing kinda fine, and people care for you.This is fucking intense. Like a 300μg LSD trip, for multiple days.Crazy, this medication likely simply changes your entire nervous system, of course that is not easy and possible to go through sober.You are a very sensible person, take care.Crazy how much detail you can keep
(DIR) Post #Am4IwD8kyXqbhyljPM by ErikUden@mastodon.de
2024-09-16T17:54:38Z
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Day 014 of the Multiple Sclerosis Study(Compound Day 11) Monday on 2024-09-16Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study07:30 Wellbeing (Pre dose)08:40 ECG (3x) 08:40 Vital signs (BP, HR) 08:55 Blood sampling FK: Sample 32SR PD 2-AG: Sample 316 08:55 Transfer bloodtubes09:10 Breakfast09:40 Dose (RO7268489 or placebo) 09:40 Dose check09.40 Water fast (Start) 11:40 Water fast (Stop) 11:40 Moming snack13:10 Lunch 15:30 Afternoon snack 18:30 Dinner 19:00 Wellbeing21:30 Evening snackMy Stats for TodayWater intake: 6 glasses (three tea, one compound)My Notes for Today10:50 (written afterwards) A number from the Netherlands began calling me, I panicked for a second, then accepted the phone call. It was the head physician asking me to write yet another E-Mail with my experiences of the past days, because he'd wish to present them to the Sponsor (Roche) with whom he had a meeting about an hour after the call. However, right after hanging up that conversation, he calls again, I accept the call and turns out he didn't consciously try to call me again, as I was just hearing background noise, most likely because his telephone was in his pocket. Regardless, I've written the following in that E-Mail:Dear▯▯▯▯▯ ▯▯▯▯,you asked me to describe my experience with the compound in the past couple of days, I will do so in the following E-Mail:The first time I took the compound, I had mild (10%) symptoms that were similar to Marijuana for about three hours. As I didn't have much to concentrate on, I also let loose, just relaxed, accepted and expected side effects. However, I always felt like I was in control and could behave normally if I concentrate on doing so!The following days (compound days 2-4), I felt nothing. No side effect, no difference in attention span, or cognitive side effects (I had work meetings, wrote long E-Mails, call people and organize things, just like without the compound).On day 5 I had a panic attack when the effects suddenly set in, not even an hour earlier I had a work meeting that went flawlessly. As described previously, I was having the exact same panic attack as when I first took weed (edibles, ate a bit too much) over a year ago. Hence, I am prone to such panic attacks caused by the sudden feeling of disorientation or loss of control, however, with the knowledge of what I can expect as a side effect to happen, both with the weed over a year ago and the compound in this study, I never had a panic attack again. I am sure that if I had been a little more attentive or was more aware of the fact that the effects might settle in later, it could've been easily prevented. Since the effects lessened from day 1 to the morning of day 5, I thought I'd never experience any symptoms anymore, if I hadn't been in that mindset and more educated about this medicine, I am sure the panic attack would not have happened.To be continued...
(DIR) Post #Am4JghMuv3bmmTYjbM by ErikUden@mastodon.de
2024-09-16T18:03:02Z
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Content Warning: Needles, and drug related medical stuff (panic attacks)10:50 (Continuation of the E-Mail) Ever since compound day 5, however (today is compound day 11), I have had lessened to no symptoms. The symptoms were around 10-30% as strong as during my one state on day 5, and instead of them lasting longer, the high phases are only 2-3 hours. The fact these effects lessen may have been due to me now drinking more, but also because I could psychologically deal with and prepare for the symptoms. On day 5, I didn't know what was going on, now I don't stress out if I may feel disoriented for a short time. In the morning, especially before, or a few hours after, the dosing at 09:40, I feel as if there has been no effect at all. Around the afternoon (12:30 - 15:30), I may experience the height of the compound, but have since always managed to still do work or complex tasks during this phase.The only thing that I notice with taking the compound today, is mostly when I concentrate on a task so much that when I look away, I become disoriented for a second, and also my mind wanders off and loses track more easily. However, I also realized that every day since day 5, the severity of these effects became less and less, meaning I might become accustomed to this state, or am able to learn how to deal with it better. I don't feel like the side effects lessen (below 5-20%), but I can find ways to handle them better. Right now is a good example of that. It's been two hours since taking the compound, slight effects settle in, I notice them if I concentrate on them, but if I simply acknowledge that something about my state of mind has changed, I can still continue to focus on writing this E-Mail.Overall, the only side effects of this drug were sometimes weed-like symptoms, but no pain, no severe problems, no sleep deprivation, and it doesn't even taste bad. I've had a very good experience both with the compound and at ICON for the past weeks.Yours sincerely,Erik UdenParticipant with the compound RO7268489(sent 11:51)13:31 (written afterwards) Some random Belgian number called me and hung up the moment I picked off. 15:00 (written afterwards) I went outside and walked for an hour! It was very refreshing. 18:25 (written afterwards)The head physician came to me and talked about how the meeting went with the sponsor. I was still in a half-sleep, as I tried to recuperate some sleep I didn't get last night due to staying up so late to finish some work. He told me that the Sponsor (Roche) has decided to no longer give me the compound RO7268489, as they are worried about my wellbeing. I had no say in the matter, as you could see, my E-Mail was even quite optimistic about my future experience with this drug. However, they saw too many risks in it, and would like for me to stop. Especially because they were worried about possible withdrawal symptoms. Hence, the new plan is to have me stay at ICON until the 21st, do all the blood and CSF samples as the schedule says, but never take any of that medicine again. My study has just been converted to a “withdrawal study”. I think that will be very interesting.This blog is obviously not over, I'll document everything until the last ambulatory visit in late November! However, it may be that the fun part has just ended, or perhaps started... We will see!
(DIR) Post #Am4Ld6WFfTeDXAL63M by ErikUden@mastodon.de
2024-09-16T18:24:45Z
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@paprikapink yeah, some people have suggested this as well! In every “wellbeing” I have on my schedule I go through all of my symptoms and things to report. I usually sit there ~15 minutes each time, because I'm honest, record every tiny little thing. I do that for my own safety, even, because thanks to such recording we could easily deduce my headaches were caused by the lumbar puncture, or recall what change may have lead to this symptom, etc.Most other people simply wanted to get through this and often never described their problems in full detail. To be fair, I was having the strongest reactions out of everyone in the group, but some other person here is sometimes completely high, talks about almost a hallucinative state, and then tells the doctors at the wellbeing “nothing new happened. I'm fine.” as then it's over after seconds, instead of minutes.So, out of all the participants, I may be the black sheep. It's probably a mix of caring for my safety and not wanting to cut off the people early that say anything negative about it. Also, maybe patients who experienced similar strong effects than I did in previous studies suffered from withdrawal symptoms, so they want to study that too or truly see the risk as being too high!But yeah, I think what you're saying is pretty realistic haha.
(DIR) Post #Am6C48y047yLiaUcca by ErikUden@mastodon.de
2024-09-17T15:47:03Z
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I'll write an update about what's going on later today! Weird things occurring...
(DIR) Post #Am6CK8FeUbvY8JNDDk by stephanie@ottawa.place
2024-09-17T15:49:56Z
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@ErikUden oh no, I hope withdrawal isn't too bad!
(DIR) Post #Am6CNecuZy43PZvrk0 by noondlyt@hellions.cloud
2024-09-17T15:50:34Z
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@ErikUden That is disappointing on their end. However, you contributed so much data in such a short time. That's pretty good.
(DIR) Post #Am6CPW0zZGepHZ5Dk0 by stvo@darmstadt.social
2024-09-17T15:50:54Z
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@ErikUden today is just a weird day. So many things happening. I am going crazy
(DIR) Post #Am6CWssGyYDyCrWD68 by noondlyt@hellions.cloud
2024-09-17T15:52:14Z
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@ErikUden @paprikapink "Withdrawal" certainly raises an eyebrow.
(DIR) Post #Am6D7wrh6LC1IWvCEq by garpu@mastodon.online
2024-09-17T15:58:54Z
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@ErikUden Wow, that's skeevy of them. :(
(DIR) Post #Am6d5ShmrSjvzJlL7Y by JanetGrBr@mastodon.social
2024-09-17T20:49:49Z
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@ErikUden No way, José.
(DIR) Post #Am6mOAlIhJ8jQYP1m4 by ErikUden@mastodon.de
2024-09-17T22:34:03Z
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17:30 (Continuation) After telling the head physician my first thoughts about going to a psychiatry, and my sentiment being very explicitly that I am not interested, he weighed in that it would be a lot of paperwork to make this happen. Although that wasn't really my concern, but if I thought I'd need to go to a psychiatry, I would ask regardless of the paperwork. There are many players here and I, at the bottom of the food chain, can't really understand who has my best interests in mind. I trust the physician a lot, as he's calm and wouldn't suggest anything if it goes against a patient's health. There's the sponsor Roche, which has suggested to take me off the compound and wishes for me to go to a psychiatry for “safety”. What it began sounding to me is that these side effects at such low doses paint a worrying picture for possible EU / FDA approval of this drug. My vehement cataloging and absolute honesty about my own health makes my record an outlier among some of my study-mates, who sometimes are the entire day not present in our realm, only to then claim “It's all fine” in the wellbeing, causing no side effects to be noted. I don't blame them, on a schedule this rough it's incentivized to keep things short. So, is Roche worried about (never mentioned) withdrawal symptoms and wants to study those, or do they want to go through my medical history to find a “legitimate” reason to dismiss my personal experience with the compound? Potentially dismiss also my negative side effects from the withdrawal if there will be any? I have no idea. Honestly, I may just understand the entire situation wrong, so take everything with a grain of salt. Possibly they're also just worried. I don't have anything to hide, I've been honest to ICON about my medical history, they even have many documents forwarded by my GP. I still stand for my privacy :) 23:54I just had a karaoke evening, we only played good songs. This place is pretty chill, I must admit. During karaoke I told the story of the head physician and the psychiatry. A guy looked me dead in the eyes and said “you know they'd give you a fortune if you do that, right?” I was like “nahh man, that's not true, is it?”, and he claimed “yeah, for any inconvenience or extra day... they're a medical company after all”, and I still don't believe him, but that may have been possible. It didn't change my mind, however, I'm very glad this will be over when it is over! Not that I hate it here, not at all, but maybe keep it low for my first study, after all :]
(DIR) Post #Am6muIKE735w9R3X8K by noondlyt@hellions.cloud
2024-09-17T22:39:50Z
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@ErikUden You are pretty close to the reality of Roche wanting you out of the study because your data set will contribute negatively to the study for a drug which has the potential to be a huge profit center for them. It is most likely the reason they want to take you off: No more adverse data.
(DIR) Post #Am6nJ4CtjztfbVRMxc by Prinz@ohai.social
2024-09-17T22:44:19Z
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@ErikUden The important thing is that you stay well with yourself
(DIR) Post #Am6nJR1gtpbANPNFBY by ErikUden@mastodon.de
2024-09-17T22:44:21Z
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@noondlyt I mean, it was a hard switch for them to no longer offer any of this compound above 1mg a day. Considering previous studies went up to 6mg.... If I now have these effects on 0.6, possibly as the first person (out of 72), it's still a worrying sign. Especially if you only take the groups that received a dose this low, I alone must make up 10-25% of the entire group of people that took this.Again, I am only speculating. It just doesn't portray too well of a task. I mean, I don't even blame Roche, it makes a lot of sense to want to find a reason why it happens to me, but nobody else. Maybe there is something in my medical history and then people with certain diseases would be additionally warned when taking this...Regardless, what's important is that I'm doing fine and am doing well tonight ^ ^
(DIR) Post #Am6nKc55Hegix4WU6q by davep@infosec.exchange
2024-09-17T22:44:36Z
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@ErikUden Wow. Roche no doubt have a lot of money invested in this and they know how to sway the results. No way are they "Possibly they're also just worried", they're scared of your symptoms losing them money, that's all. Trust the physician 👍
(DIR) Post #Am6nLdWZP36jiYrpCK by ErikUden@mastodon.de
2024-09-17T22:44:48Z
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@Prinz absolutely! Thank you! And that I do, and I am very happy with everything going on at the moment :blobcatmeltlove:
(DIR) Post #Am6nTg8jYvXQ98YKp6 by Prinz@ohai.social
2024-09-17T22:46:16Z
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@ErikUden Very good!!! I wish it continues like this 🙏
(DIR) Post #Am6ncRQZdDRv7i4kW8 by noondlyt@hellions.cloud
2024-09-17T22:47:49Z
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@ErikUden I am glad to hear you are feeling good 🙂
(DIR) Post #Am7Lm0vuOD8mHzT6LA by Pentropy@lazysocial.de
2024-09-18T05:10:30Z
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@ErikUden guess you are right, doctors *may* be on your side. Some are corrupt, maybe many, but there are also good guys. Big pharma is bad. I remember Roche by name, means they had at least one scandal i read about, so @noondlyt might be pretty right.From a patients perspective, and this is just a thought, not advice how to proceed: drugs often have a section "Contraindication", means "don't give this to patients if...". Not a big thing, doctors can prescribe it anyway if they think the patient is a exception. So if you had prior psychiatric history, maybe another (drug induced) panic attack, maybe other phenomena, all they had to do is adding a lil bullet point "careful if the patient has priors". No big deal to me or the prescribing doctors. Not sure if that makes big problems with approval, but don't think so, maybe Lauren knows more.Like I have medication for emergencies. Many docs already go nuts when they hear the name because of the side effects and i have some contraindications. I just need it for emergencies, so many side effects don't kick in and the last few, well, without the drug quality of life goes below 0, so it's not a big thing compared to not having it, so i get the prescription easily. Also I never had any contraindication related side effects. Docs know it's not such a big thing.tl;dr: In real world for drugs already on the market, this is just a lil side note for doctors to make a decision if it's worth the risk and for a few patients to know what to expect. To some patients that can be important. So I'd expect if it's just about the side note, Roche would be fine enough with the hospital's psychiatrist to do a short evaluation. Psychiatry because of *one* panic attack which is already over just isn't a thing. Here they'd kick you out saying they're not a hotel. Not kidding, several patients say they like that phrase. So it's pretty legitimate to assume that something bad is going on.
(DIR) Post #Am7PWMWUkYbaQuNDma by ErikUden@mastodon.de
2024-09-18T05:52:31Z
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13 minutes until my last lumbar puncture! Wish me luck :blobcathuggies:
(DIR) Post #Am7Pb7dRWwRlhstR4K by adipoeserPursch@troet.cafe
2024-09-18T05:53:20Z
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@ErikUden 🍀🍀🍀
(DIR) Post #Am7PcheZ6LZfhkAiQK by susiemagoo@mstdn.social
2024-09-18T05:53:39Z
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@ErikUden 🍀🤞🧧
(DIR) Post #Am7PdBr0odM9N2E4zQ by ffbikerpi@mastodon.uno
2024-09-18T05:53:44Z
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@ErikUden good luck 🤞
(DIR) Post #Am7PeOjqOhBbcWRujI by Jeany@troet.cafe
2024-09-18T05:53:57Z
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@ErikUden 🫂👋🍀🍀
(DIR) Post #Am7PjZRA2zySFXB1fs by RunRichRun@mastodon.social
2024-09-18T05:54:53Z
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@ErikUden👍💪💪Only good wishes!
(DIR) Post #Am7Q0frjOp3r6tlDFo by TheBreadmonkey@beige.party
2024-09-18T05:57:57Z
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@ErikUdenGood luck!
(DIR) Post #Am7Q5718OMz0ThH6ae by vwdasher@weird.autos
2024-09-18T05:58:46Z
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@ErikUden hope it goes well!
(DIR) Post #Am7QBqkbGm7q3Sknqq by _maleficentgirl@troet.cafe
2024-09-18T05:59:59Z
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@ErikUden are you gonna try the singing?
(DIR) Post #Am7QHRCv9SMmZUfJ20 by esistok@troet.cafe
2024-09-18T06:01:01Z
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@ErikUden giod luck!
(DIR) Post #Am7QdsDjOkWSiok5ui by bberkholz@fedisabled.social
2024-09-18T06:05:04Z
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@ErikUden 🤞🍀
(DIR) Post #Am7QjKVpdXppupoK3M by IngridAusOL@norden.social
2024-09-18T06:06:03Z
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@ErikUden Daumen sind gedrückt 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀
(DIR) Post #Am7QjzLdoL2qZ6MGMS by grillaum@mastodon.social
2024-09-18T06:06:11Z
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@ErikUden finger crossed and thumbs pressed
(DIR) Post #Am7QrOitrhNbI9loq8 by grumpydad@infosec.exchange
2024-09-18T06:07:32Z
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@ErikUden Good luck!
(DIR) Post #Am7Ssr1GLVcTFUBJJo by catsche@nrw.social
2024-09-18T06:30:11Z
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@ErikUden 🍀
(DIR) Post #Am7T8OyQO48otqGejQ by fst@mstdn.io
2024-09-18T06:33:00Z
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@ErikUden sounds painful.
(DIR) Post #Am7UI0CPS7u6ufx0Jk by ShaulaEvans@zirk.us
2024-09-18T06:45:57Z
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@ErikUden I hope it is the best, fastest, easiest, least painful, best-performed lumbar puncture in the history of medicine.
(DIR) Post #Am7Y0a6hbnlusrEJCi by Caiotekit@convo.casa
2024-09-18T07:27:37Z
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@ErikUden 🤞
(DIR) Post #Am7cGIbWqpJX39OnCa by syphilia@kafeneio.social
2024-09-18T08:15:16Z
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@ErikUden If they take you off the compound you are probably free to leave and probably should. The psychiatrist stuff - you're right to refuse it.I'm pretty sure they want to take you out of the study so they do not have to mention panic attacs because you have never existed.Also, they may read your reports here and they don't like you being so articulate and honest. Be suspicious! 💪
(DIR) Post #Am7fSK3hZLd0tk095c by ErikUden@mastodon.de
2024-09-18T08:51:05Z
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@ShaulaEvans it actually was. I feel and felt nothing!
(DIR) Post #Am7ivRmsDHND80i2dc by 45500@troet.cafe
2024-09-18T09:29:55Z
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@ErikUden 🍀
(DIR) Post #Am7khgCM2KOng3Bt9U by ErikUden@mastodon.de
2024-09-18T09:49:51Z
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@PKYo last time I laid an hour on my stomach + 2 hours more on my back (in surpine position). I've been doing the same today!
(DIR) Post #Am7vSyvBF2m2tiLrtY by CharJTF@a11y.info
2024-09-18T11:50:28Z
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@ErikUden {{{hugs}}} Here's hoping it goes well!
(DIR) Post #Am7yMpUTgw8xm2cUvA by guayabito@mastodon.cr
2024-09-18T12:22:52Z
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@ErikUden 🙏🕯️🙏🕯️🙏🕯️🙏🕯️
(DIR) Post #Am8LFFKE3LXYWmB4Lo by ShaulaEvans@zirk.us
2024-09-18T16:39:19Z
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@ErikUden Wunderbar! I'm so happy to hear it.
(DIR) Post #Am9q50676bR88p8C1Y by ErikUden@mastodon.de
2024-09-19T09:59:32Z
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Day 017 of the Multiple Sclerosis Study(Compound Day 14) Thursday on 2024-09-19Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the study06:00 Telemetry (Connect) 06:30 Intravenous catheter (Check) 07:30 Wellbeing (Pre dose) 07:40 Urine clinical chemistry (Not sooner) 07:40 Body weight07:40 Physician taskNeurological examination Brief Psychiatric Rating Scale C-SSRS07:50 Telemetry Start 08:00 Telemetry (Start subject lay down [312h]) 08:10 Telemetry (Make ECG print [3x]) 08:15 Telemetry (Stop subject lay down [312h])08:15 Vital signs (BP, HR) 08:20 Blood samplingPK: Sample 35PL PD 2-AG: Sample 112 SR PD 2-AG: Sample 318Clinical chemistry08:20 Transfer bloodtubes 08:30 Cogstate (Neurocognitive Test Battery) 09:00 Urine collectionUrinate into tollet Start container 709:10 SB Breakfast (Start) 9:40 Dose (RO7268489 or placebo)9:40 Dose check09:40 Water fast (Start) 09:45 Blood sampling (PK: Sample 36) 09:45 Transfer bloodtubes09:50 Telemetry (Start subject lay down [312.5h])10:00 Telemetry (Make ECG print [3x])10:05 Telemetry - Stop subject lay down [312.5h])10:05 Vital signs (BP, HR) 10:10 Blood samplingPK: Sample 37-'SR PD 2-AG: Sample 31910:10 Transfer bloodtubes10:20 Telemetry (Start subject lay down [313h])10:30 Telemetry (Make ECG print [3x])10:35 Telemetry (Stop subject lay down [313h])10:35 Vital signs (BP, HR) 10:40 Blood sampling (PK: Sample 38) 10:40 Transfer bloodtubes11:10 Blood sampling (PK: Sample 39) 11:10 Transfer bloodtubes11:20 Telemetry (Start subject lay down [314h])11:30 Telemetry (Make ECG print [3x])11:35 Telemetry (Stop subject lay down [314h])11:35 Vital signs 11:40 Blood samplingPK: Sample 40PL PD 2-AG: Sample 113SR PD 2-AG: Sample 32011:40 Transfer bloodtubes11:40 Water fast (Stop) 12:20 Telemetry (Start subject lay down [315h])12:30 Telemetry (Make ECG print [3x measurement])12:35 Telemetry (Stop subject lay down [315h])12:35 Vital signs (BP, HR) 12:40 Blood sampling (PK: Sample 41) 12:40 Transfer bloodtubes12:40 Cogstate (Neurocognitive Test Battery) 13:20 Telemetry (Start subject lay down [316h])13:30 Telemetry (Make ECG print [3x measurement])13:35 Telemetry (Stop subject lay down [316h])13:35 Vital signs (BP, HR) 13:40 Blood samplingPK: Sample 42PL PD 2-AG: Sample 114SR PD 2-AG: Sample 32113:40 Transfer bloodtubes13:40 SB Lunch (Check post dose restrictions) 15:00 Intravenous catheter (Check) 15:20 Telemetry (Start subject lay down [318h])15:30 Telemetry (Make ECG print [3x measurement])15:35 Telemetry (Stop subject lay down [318h])15:35 Vital signs (BP, HR) 15:40 Blood sampling (PK: Sample 43) 15:40 Transfer bloodtubes15:40 Urine collectionStop container 7Start container 815:40 Transfer Urine containers16:15 Telemetry (Continue) 16:15 Urine collection (Continue) 17:40 Blood sampling (PK: Sample 44) 17:40 Transfer bloodtubes19:00 Wellbeing19:20 Telemetry (Start subject lay down [322h])19:30 Telemetry (Make ECG print [3x])19:35 Telemetry Stop subject lay down [322h]) 19:35 Vital signs (BP, HR) 19:40 Blood samplingPK: Sample 45SR PD 2-AG: Sample 32219:40 Transfer bloodtubes19:40 SB Dinner21:20 Telemetry (Start subject lay down [324h])21:30 Telemetry (Make ECG print [3x measurement])21:35 Telemetry (Stop subject lay down [324h])21:35 Vital signs (BP, HR) 21:40 Blood sampling (PK: Sample 46) 21:40 Transfer bloodtubes21:40 Urine collectionStop container 8Start container 921:40 Transfer Urine containers22:00 Intravenous catheter (Check) 23:15 Telemetry (Continue) 23:15 Urine collection (Continue)To be continued...
(DIR) Post #Am9qCX7KjmtaZqIGGG by vwdasher@weird.autos
2024-09-19T10:00:50Z
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@ErikUden hope you're feeling ok.
(DIR) Post #Am9qVdOHdZxxXHKW3s by ErikUden@mastodon.de
2024-09-19T10:04:22Z
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Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Stats for TodayWater intake: 3 (glasses, one tea) My Notes for Today05:47 (written afterwards) The schedule said 6 AM! They came at this ungodly hour to connect me with cables, hahaha. 12:00 Oh man, it's been a long day so far. Many appointments, but I've sort of gotten used to it? I'm glad I'll be out in just two nights (!!), although I don't hate it here, I am just happy to see my friends and family again :) Yesterday, during my last wellbeing, I had a much longer conversation with an assistant who also happened to be a psychologist. She told me more about the offer from Roche and what it was about. There were a lot of misunderstandings and I'll have another conversation with my physician about it. I have not changed my mind, I just want to be sure about what is going on. Additionally, apparently I can request a meeting with him at any time (even by phone) due to “informed consent”. If there's something I don't understand, it's his job to make it clear to me, otherwise I'd have legitimate reasons to leave.
(DIR) Post #AmA1y5StwwD8DAGAee by pochitoque@sivar.cafe
2024-09-19T12:12:43Z
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@ErikUden Cup of cocoa to enhance our M.S studies Mr. hope you doing better.
(DIR) Post #AmAVE04IgD4wmGh1aS by syphilia@kafeneio.social
2024-09-19T17:40:33Z
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@ErikUden The good thing with your having taken cannabis a year ago is you could recognize your own reactions the other day. If you hadn't it could have been seriously scary. So in reality that was a blessing and you're a true asset for them. But beware of Roch ... 👍
(DIR) Post #AmBgK9f9DMg0vQ1d7w by ErikUden@mastodon.de
2024-09-20T07:19:38Z
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Day 018 of the Multiple Sclerosis Study(Compound Day 15) Friday on 2024-09-20Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the studyC-SSRS = Columbia-Suicide Severity Rating Scale06:30 Intravenous catheter (Check) 07:15 Telemetry (Continue) 07:15 Urine collection (Continue) 07:30 Wellbeing09:20 Telemetry (Start subject lay down [336h])09:30 Telemetry (Make ECG print [3x])09:35 Telemetry (Stop subject lay down [336h])09:35 Vital signs (BP, HR) 09:40 Blood samplingPK: Sample 47PL PD 2-AG: Sample 115SR PD 2-AG: Sample 323Remove intravenous catheter09:40 Transfer bloodtubes09:40 Urine collectionStop container 9Start container 1009:40 Transfer Urine containers09:40 Telemetry StopDisconnect + Archive09:40 Breakfast10:10 Physician task Brief Psychiatric Rating Scale C-SSRS10:40 Morning snack10:40 Intravenous catheter (Inspection) 12:10 Lunch 15:00 Afternoon snack15:15 Urine collection (Continue) 17:30 Dinner19:00 Wellbeing20:30 Evening snack23:15 Urine collection (Continue)My Stats for TodayWater intake: 1 (glass)My Notes for Today09:17Wow, I haven't really had an appointment up until now / in three minutes. It's gonna be a nice day with little appointments, unlike yesterday. The worst is over, no more lumbar punctures and only two times of a blood sample being taken. My time here is almost up, as tomorrow I'll leave. Today is my last full day here in Groningen, I better enjoy it!
(DIR) Post #AmBgPaIRcNkuyazl1k by adipoeserPursch@troet.cafe
2024-09-20T07:20:36Z
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@ErikUden 👍🏾💚
(DIR) Post #AmBmbwVVSrZb3sNfou by syphilia@kafeneio.social
2024-09-20T08:30:05Z
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@ErikUden 💪 ⚕️ 👌
(DIR) Post #AmE38rpPruTpgnKp3A by ErikUden@mastodon.de
2024-09-21T10:44:44Z
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Day 019 of the Multiple Sclerosis Study(Compound Day 16) Friday on 2024-09-21Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for TodayGlossaryBP = blood pressureHR = heart rateSB = (study bound) meal controlled for the studyC-SSRS = Columbia-Suicide Severity Rating Scale07:15 Urine collection (Continue) 07:30 Wellbeing07:40 Urine clinical chemistry (Not sooner) 09:30 ECG (3x measurement) 09:30 Vital signs (BP, HR) 09:40 Blood samplingPK: Sample 48SR PD 2-AG: Sample 324 Clinical chemsitry09:40 Transfer bloodtubes09:40 Cogstate (Neurocognitive Test Battery) 09:40 Urine collectionStop container 10Stop collection09:40 Transfer Urine containers09:40 Breakfast10:00 Physician task (Cannabis Withdrawal Scale) 11:30 DischargeHand out information cardTime may differStats for TodayWater intake: 4 (glasses, one tea)My Schedule for Today12:19Welp, I'm out. It was quicker than I expected, and I forgot my charger there (no worries, I'll be back in just two days), but... wow, it's actually over. I haven't fully had the time to comprehend it by now. The morning I “slept in” until 8:15, the assistants “looked the other way” for breakfast (I could actually eat a yogurt) and all the tests went over swiftly. Except for the blood sample, that, for some reason, was worse than ever, but who cares! It's over! Actually over. I cannot believe that the time went by so quickly.To be fair, I quite liked the environment. Everything was taken care of for you! You'd get food 6 times a day, had a washing machine and dryer, there'd be events organized for you (bowling, walking outside, massages...), there are rooms for recreational activities (board / card games, video games, watching TV, even a karaoke machine). It'd be nice for such facilities to just exist as a public service, not for profit making, but it's really nice regardless! 12:24As I was about to finish that last thought, the bus arrived in Groningen. The bus driver stepped outside and said “You'll need a passport with you, due to the uhh, controls”. Then I remembered: the “progressive” German government (Liberals, Greens, Social Democrats) has for the first time since Covid enacted border patrols in order to “stop illegal migration”. A Dutch citizen was just told that she couldn't come with us on the bus ride as her national ID wouldn't suffice Germany's border patrol. This is among the most ridiculous events in Germany's modern political history, and the biggest indicator for our nations shift to the far right. The fascist AfD has completely annexed any political narrative and made their major talking points the only political talking points. As their rise to power becomes more inevitable by the day, every opportunist political party begins the race to the right, always trying to one up the others in how much of the AfD's proposals they can implement in the hopes of “winning back” some of the far right voters.Implementing AfD proposals so that the AfD doesn't do it has to be among the most mindless political actions.My Trip Home2024.09.21 | Trip from ICON--------------🌱🚂🚄🚝🚇🌲-------------╔═════[🇳🇱Groningen🇳🇱]════║╠═🔴╡12:30 Groningen╠═🟢╡13:25 Leer (Ostfriesland) ╠═🚍╡Bus 72008 68 km║╠═════════Leer════════║╠═🔴╡13:41 Leer (Ostfriesland) ╠═🟢╡15:41 Verden╠═🚍╡RE 1 135 km║╚══════[🇩🇪Verden🇩🇪]═════Stats:Time Interval Travelled12:30 - 15:41Total Time Travelled03:11 hTotal Distance Travelled203 kmLive Track my Journey#NowTräwelling [1] https://traewelling.de/status/3432155 [2] https://traewelling.de/status/3432185
(DIR) Post #AmE5Tj1K0lMAMSydyy by hamkaas@mstdn.social
2024-09-21T11:10:53Z
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@ErikUden https://www.rijksoverheid.nl/onderwerpen/paspoort-en-identiteitskaart/vraag-en-antwoord/naar-welke-landen-reizen-met-nederlandse-identiteitskaartA dutch identity card is valid in Germany!
(DIR) Post #AmE5h2kBzSRvIXJcxc by ErikUden@mastodon.de
2024-09-21T11:13:20Z
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@hamkaas I guess the person didn't have one with them! It was still a scary moment seeing this. You go away for 19 days, and one moment to the next there are border controls again.
(DIR) Post #AmE61sQhXAXfOE8IxE by ErikUden@mastodon.de
2024-09-21T11:17:07Z
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@hamkaas no it is not, the woman in front of me is getting dragged out the bus right now
(DIR) Post #AmE6I369dV4V6xEYgC by ErikUden@mastodon.de
2024-09-21T11:20:02Z
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@hamkaas it's a real shitshow here, a guy only had a driver's license and the police made a big fuss about it. He said he left Germany before the new law was in place :blobcatgooglyholdingitsheadinitshands:
(DIR) Post #AmE6NCPKS4xBQnesM4 by ErikUden@mastodon.de
2024-09-21T11:20:58Z
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@privateger well, maybe I am misremembering something. Maybe she only had a driver's license too, I don't know. They were speaking Dutch. But the border patrol was certainly not happy :(
(DIR) Post #AmE7G04a0tO96S5Hm4 by ErikUden@mastodon.de
2024-09-21T11:30:51Z
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Welkom in Duitsland 2024
(DIR) Post #AmE7OqVoven43d2mJc by notmybackdoorbug@mastodon.social
2024-09-21T11:32:27Z
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@ErikUden Bedankt voor het bezoeken van Nederland.U kunt weer...uh blijkbaar niet doorrijden!Succes ermee, he!
(DIR) Post #AmE7hs5jHX3USPubTM by adipoeserPursch@troet.cafe
2024-09-21T11:35:53Z
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@ErikUden Ouuu. Erst die Strapazen der MS-Studie und jetzt DAS? 🤦🏾♂️💚
(DIR) Post #AmE7oFAgNsifmAGdX6 by Ugman@mastodon.social
2024-09-21T11:37:03Z
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@ErikUden Wilkommenskultur
(DIR) Post #AmE7tqwBOjteLy9yFM by ErikUden@mastodon.de
2024-09-21T11:38:04Z
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@notmybackdoorbug Nederland is geweldig!! Duitsland is niet :(
(DIR) Post #AmE7vj53a3v6Z5ChBQ by ErikUden@mastodon.de
2024-09-21T11:38:23Z
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@Ugman Die Welt zu Gast Bei Freunden und so...
(DIR) Post #AmE8EVAdWQ0mvSlaU4 by Radlerin@troet.cafe
2024-09-21T11:41:47Z
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@ErikUden Ist nicht dein Punkt, aber die Symbolkraft des umgedrehten 'hier gilt die StVO'-Schilds hat auch was.
(DIR) Post #AmE8WEWc9FbAVsV9ou by Huubje@ieji.de
2024-09-21T11:44:58Z
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@ErikUden wat een teringzooi. Wat gaan we doen, reinheitsgebot overtredingen binnensmokkelen?
(DIR) Post #AmE9HAphh1wIfloUaG by ErikUden@mastodon.de
2024-09-21T11:53:29Z
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what a nice little border patrol does to my plans
(DIR) Post #AmEA5Mr3Gq76R8NVjs by slothrop@chaos.social
2024-09-21T12:02:30Z
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@ErikUden Ah, thank goodness they’re protecting us from the hordes pouring across the Dutch-German border 🙄(This region has more cows than people, both sides of the border. Any undocumented migrants coming from the general direction of the Middle East / North Africa would have to take an *extremely* roundabout route to get there.)
(DIR) Post #AmEAr73TJgpRKoxE36 by young_ullrich@norden.social
2024-09-21T12:11:09Z
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@ErikUden irgendwie hör ich das @thw noch zu leise meckern, dass hier hilfsleistungen erbracht werden müssen
(DIR) Post #AmEBbKLcE8ftskTfai by PKYo@poweredbygay.social
2024-09-21T12:19:31Z
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@ErikUden 🎖️
(DIR) Post #AmEGriS0sZfZ2b6W1Y by Bundescancela@troet.cafe
2024-09-21T13:18:27Z
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@ErikUden
(DIR) Post #AmEHOs4M8gNwQbqeau by Ines64@mastodon.de
2024-09-21T13:24:31Z
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@ErikUden Bist du kontrolliert worden?Ariane an der Schweizer Grenze auch.
(DIR) Post #AmEMJmvUKhJOng60wa by janhelms@rheinneckar.social
2024-09-21T14:19:36Z
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@ErikUden Wenn wir erst 3°C plus haben, dann müssen die sich um die Horden Niederländer kümmern, die aus ihren abgesoffenen Landen fliehen.
(DIR) Post #AmENC9iFpSiP6opXpQ by ErikUden@mastodon.de
2024-09-21T14:29:27Z
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@Ines64 jap, wollten meinen Perso sehen und hätten am liebsten meinen Pass gehabt.
(DIR) Post #AmEQIi6TB7R5MxyRyy by TheLancashireman@hostux.social
2024-09-21T15:04:13Z
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@ErikUden Did that start today? I crossed over at Venlo (A73 NL to A61 DE) on Thursday. No sign of any checks.
(DIR) Post #AmERWK6DK0l6vjuRRQ by ErikUden@mastodon.de
2024-09-21T15:17:55Z
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@TheLancashireman I have no idea. It was the first time for me too.
(DIR) Post #AmERg4xcSgMesHXcXY by TheLancashireman@hostux.social
2024-09-21T15:19:39Z
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@ErikUden Come to think of it, there isn't even an old border station on that route, unlike (for example) the A76/A4 crossing near Aachen.
(DIR) Post #AmEWjEjn4DwxpwOjbM by jak2k@mastodontech.de
2024-09-21T16:16:15Z
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@ErikUden Einfach nicht die Autobahn nehmen…
(DIR) Post #AmEkFPgPCs7mSDUJea by hamkaas@mstdn.social
2024-09-21T18:47:43Z
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@ErikUden within the EU you always need a valid id/passport. That there were no bordercontrols does exempt you from stick to the rules. I live only few miles from dutch german border, do half of my shopping in germany. I should take my passport/id every time I go there, of course I also forget to take it lots of times...
(DIR) Post #AmIBdvi14CZ4y32IEq by ErikUden@mastodon.de
2024-09-23T10:38:51Z
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Day 020 of the Multiple Sclerosis Study(Compound Day 18) Monday on 2024-09-23Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for Today10:00 Ambulatory visitSubjet check in between 08:00 and 11:00Check information cardUrine clinical chemistryWellbeing + concomitant medicationECG (3x measurements after 10 minutes in supine position)Vital signs (BP, HR)10:00 Ambulatory visitBlood PK: Sample 49Blood PL PD 2-AG: Sample 116Blood SR PD 2-AG: Sample 325Blood clinical chemistryNeurological examinationBrief Psychiatric Rating ScaleC-SSRSHand out bread packageDischarge My Notes for Today09:09Waiting for my bus in Zuiderdiep (E). Had a wild night due to a long call with a good friend. We haven't talked in a long time, so we talked for 9.5 hours, but now I'm sleepy as hell. Hope it'll all go fine today! I really don't get why we couldn't just stay the Sunday and Monday too, but rather leave on Saturday to come back on Monday. Probably a cost reason more than anything else! Regardless, I staid in a nice hostel for the night (almost thought I'd have the room to myself, but then another person came who initially thought the same thing) for 31€ and got little sleep... but I just know that today is gonna be a good day!12:37It went over really quickly! I was out by 11 AM. I had no side effects, and got a nice little treat (food) in the end. Also they had found my charger which I forgot when I left here recently. Truly a life saver now that I can charge my phone!
(DIR) Post #An1sOKfWUaIkH28xv6 by ErikUden@mastodon.de
2024-10-15T11:39:51Z
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Day 021 of the Multiple Sclerosis Study(Compound Day 40) Dienstag on 2024-10-15Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for Today10:00 Ambulatory visitSubjet check in between 08:00 and 11:00Check information cardUrine clinical chemistryWellbeing + concomitant medicationECG (3x measurements after 10 minutes in supine position)Vital signs (BP, HR)10:00 Ambulatory visitBlood PK: Sample 49Blood PL PD 2-AG: Sample 116Blood SR PD 2-AG: Sample 325Blood clinical chemistryNeurological examinationBrief Psychiatric Rating ScaleC-SSRSHand out bread packageDischarge My Notes for Today13:14It was just a regular visit today, nothing big happened. It was surprisingly painless (literally, no pain) to have my blood taken and I was out of the ICON facility before it even started. As I have none follow up appointments, it was much less stress free getting here and leaving than expected.I got up at 3:30 today and was still one minute late for my 4:20 train, so I called ICON and said I was gonna be here an hour later and they were fine with it. Much more relaxing experience than expected, although weird things happened at the Hannover central station, I spent some time in the DB Lounge, got a nice hot tea to warm my hands on, threw it away as I wasn't allowed to drink anything but water, and then took my 6:46 train to Leer!I fell asleep a couple of times on my bus from Leer to Groningen.Well, and now that I'm going back, I just have time to finish my work and chill a bit. I have no side effects and nothing worrying to report! I'm doing well :]
(DIR) Post #An1sq3ZFfRgVLNQjIm by virgil_tibbs@norden.social
2024-10-15T11:44:51Z
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@ErikUden wie nacht man das mit der Inhaltswarnung?
(DIR) Post #An2AqziXGaFUroMy5A by guayabito@mastodon.cr
2024-10-15T15:06:40Z
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@ErikUden thank you for the update! 👏👏👏
(DIR) Post #Anp6DInpUYtIRgClpA by ErikUden@mastodon.de
2024-11-08T05:35:34Z
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Day 022 of the Multiple Sclerosis Study(Compound Day 63) Friday on 2024-11-08Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for Today10:00 Ambulatory visitSubjet check in between 08:00 and 11:00Check information cardUrine clinical chemistryWellbeing + concomitant medicationECG (3x measurements after 10 minutes in supine position)Vital signs (BP, HR)10:00 Ambulatory visitBlood PK: Sample 49Blood PL PD 2-AG: Sample 116Blood SR PD 2-AG: Sample 325Blood clinical chemistryNeurological examinationBrief Psychiatric Rating ScaleC-SSRSHand out bread packageDischarge My Notes for Today06:33Man, I'm tired. Already arriving in Leer soon, I've been up since 4:45. Been talking to my American friends until ~3:20. Lots been happening over there. Now I'll have to wait until 07:30 for the bus that drives to Groningen.
(DIR) Post #AnpgHVaVUnfPbdHKJE by guayabito@mastodon.cr
2024-11-08T12:19:42Z
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@ErikUden I hope everything is going well 🙏🫂🫂
(DIR) Post #AoX5MFqHdFwWg238nw by ErikUden@mastodon.de
2024-11-29T10:53:17Z
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Day 023 of the Multiple Sclerosis Study(Compound Day 85) Friday on 2024-11-29Groningen, Netherlands (GMT+1)Content Warning: Needles, and drug related medical stuff (panic attack), pain through medical actionsMy Schedule for Today10:00 Ambulatory visitSubjet check in between 08:00 and 11:00Check information cardUrine clinical chemistryWellbeing + concomitant medicationECG (3x measurements after 10 minutes in supine position)Vital signs (BP, HR)10:00 Ambulatory visitBlood PK: Sample 49Blood PL PD 2-AG: Sample 116Blood SR PD 2-AG: Sample 325Blood clinical chemistryNeurological examinationBrief Psychiatric Rating ScaleC-SSRSHand out bread packageFinal DischargeTripsMy Trip to Groningen2024.11.28 | Trip to ICON--------------🌱🚂🚄🚝🚇🌲-------------╔═════[🇩🇪Hannover🇩🇪]════║╠═🔴╡16:46 Hannover Hbf╠═🟢╡19:19 Leer (Ostfriesland) ╠═🚄╡IC 2036 222 km║╠═════════Leer════════║╠═🔴╡19:30 Leer (Ostfriesland) ╠═🟢╡20:25 Groningen Hoofdstation╠═🚍╡Bus72014 68 km║╚══════[🇳🇱Groningen🇳🇱]═════Stats:Time Interval Travelled16:46 - 20:25Total Time Travelled3:39hTotal Distance Travelled290km Live Track my Journey#NowTräwelling [1] https://traewelling.de/status/3878778[2] https://traewelling.de/status/3879462My Trip Back to Hannover2024.11.29 | Trip from ICONthree failed plans later...--------------🌱🚂🚄🚝🚇🌲-------------╔═════[🇳🇱Groningen🇳🇱]════║╠═🔴╡12:10 Groningen CS Hoofdstation╠═🟢╡13:25 Leer (Ostfriesland) ╠═🚍╡Bus72014 68 km║╠═════════Leer════════║╠═🔴╡13:41 Leer (Ostfriesland) ╠═🟢╡16:38 Groningen Hoofdstation╠═🚍╡RE1 222km ║╚══════[🇩🇪Hannover🇩🇪]═════Stats:Time Interval Travelled12:10 - 16:38Total Time Travelled4:31hTotal Distance Travelled290km Live Track my Journey#NowTräwelling [1] ? [2] ?
(DIR) Post #AoX5Qz3BUXMG2tL55k by ErikUden@mastodon.de
2024-11-29T10:54:09Z
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My Notes for Today10:31Currently on a bus (Paddepoel, Line 9) back to the central station! Usually, around this time my journey through such an ambulatory visit would have just begun, but this time I've decided to already go to Groningen a day earlier to come to the ambulatory as soon as possible in order to leave earlier. I wanted to do this in order to be back in time for a [insert at a later date] in Hannover! I got up at 07:00 AM, left the Simplon Hostel I stayed in for the night, and arrived at ICON 08:41. They open at 08:30. To my surprise, after checking in, they almost immediately began the usual routine. I was asked to show my ID, show my safety card (which I've kept at the back of my phone), got asked all of the wellbeing questions, closed some already gone symptoms, and was then asked to “deliver a urine sample” to say it in the nicest of words. This is where my critical mistake happened — as usually, when I travel from Hannover or some other city, the time it takes to travel across nations is usually enough for me to be able to deliver this sample. Considering my last bathroom visit was mere minutes ago, I had fallen for a classic blunder. A critical flaw in my plan.They understood, I drank a lot of water, and left for the ECG, blood pressure and blood samples. The ECG was fine, but my blood pressure was too high. This morning I was informed of something very annoying I'd rather keep off the internet, but it, especially dealing with it, had me thinking in circles and driving up my blood pressure. It was actually so high they could no longer consider me a healthy patient, which is why they had to retake the sample. I calmed down, luckily, and the second test was fine. Throughout the entire study and all follow up visits, this has never happened, only adding to the fact that what I was informed of this morning annoyed me to the core. I'm also sorry for the readers, you won't ever know what was going on, just know it's nothing personal, but it still hits me on a deeper level.Sadly, the fact I couldn't perform a visit to the water closet, threw around the whole schedule. They couldn't measure my body weight because that needs to be done on an “emptied bladder”, they couldn't do a cognitive test because that needs to be done on the same conditions. Usually, I wouldn't care about being a few minutes off schedule but my original plan was leaving at 10:10 from Groningen Central Station in order to be 15:00 back in Hannover, which would've been easily possible when I arrived at 08:30!Sooner than later I did manage to do everything asked of me, had a talk with the doctor after some waiting, and was able to leave around 10:20. Which was not an issue, I thought to myself, not realizing that a few minutes earlier all alternatives to my planned route back home had been canceled. I was counting on a new connection I've taken several times, a train from Groningen going to Bad Nieuweschans and then a regional bus going from there all the way to Leer, making me arrive 15:13 in Hannover! Sadly, for no particular reason, the stop “Groningen” was canceled. The follow up train which would've allowed me to be 16:00 in Hannover was also, subsequently, canceled, despite no apparent connection of the two. Maybe something happened on the route to or from Groningen?The next direct bus hence became my only option, the same bus I would've taken if I didn't stay in Groningen for the night. A bit frustrated and disappointed, I have now come to terms with my predicament. A bridge between Germany and the Netherlands collapsing, preventing constant trains from connecting the two places, leading to a singular bus route being created as a replacement years ago, advertised as simply an interim solution, now being the status quo. A singular bus, not two in parallel. Miss one, you'll have to wait more than two hours for the next. That's where I am at.
(DIR) Post #AoX5Uk0lLeriYqzwAK by ErikUden@mastodon.de
2024-11-29T10:54:50Z
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My Notes for Today11:45 ContinuationCurrently sitting in a Starbucks at the central station with a glazed donut.When finishing my conversation with the doctor many minutes ago, I asked when I would know whether I had the placebo or not. They told me I'd have to wait 4-5 months, then call and ask. I also wondered whether the drug would permanently affect my experience of taking marihuana in any shape or form, I was told that this is not the case, and that I could do so as I please.I saw the people from my study one last time and wished them a final goodbye and thought it was interesting to most likely never see them again. To think that just two months ago we were playing board games, lying in bed next to one another, and anticipating future medical procedures, and from today on we'll simply be strangers. I can only wish them the best of luck!
(DIR) Post #AoX6kEOGmW7b4uwXlg by ErikUden@mastodon.de
2024-11-29T11:08:50Z
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The raw Deutsche Bahn :db_b: experience
(DIR) Post #AoX6uEQrTsaW6UvMsy by ErikUden@mastodon.de
2024-11-29T11:10:39Z
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So glad for the first option the “trip is not possible” but can still be booked and for the second option it claims that “booking not possible”. This is the true mission impossible.
(DIR) Post #AoX70fu4G01r2cepIu by stereo4x4@techhub.social
2024-11-29T11:11:45Z
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@ErikUden
(DIR) Post #AoX7RIQ1gDzg1YIeC8 by c_pra@troet.cafe
2024-11-29T11:16:36Z
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@ErikUden viel glück und möglichst kurze odyssee!
(DIR) Post #AoX7Wf7mgiGTtPKHUe by thunfisch@chaos.social
2024-11-29T11:17:34Z
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@ErikUden just guessing, but maybe the first one is still bookable because the reason for the connection not being reachable is due to a different company for the first part of the journey, so DB is not liable for refunds. Whereas the second connection is fully DB so they would need to refund/remove train restrictions so they avoid that by not selling it?
(DIR) Post #AoX7qkUWRbD6KSXWHg by mrtnsnp@mastodon.social
2024-11-29T11:21:12Z
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@ErikUden Groningen to Groningen Europapark is not possible because of emergency track works. Nothing goes from Groningen. Try ns.nl for the first part to see where you may need to start.
(DIR) Post #AoX7v8DEBwzh3aXY5g by hamkaas@mstdn.social
2024-11-29T11:21:58Z
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@ErikUden check ns.nl track issues east Groningen
(DIR) Post #AoX8C09VPbX0ywqLVg by frechdachs@todon.eu
2024-11-29T11:25:02Z
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@ErikUden 😔 it's so disappointing, DB has some decent infrastructure (not in this case though, looking at those connections!) Its the chronic lack of investment by conservatives obsessed with fiscal austerity and then now the f**king neo-liberals tweaking around the edger and some anaemic investment. The Deutschlandticket is a good idea though (at least when it was at €49 anyway).
(DIR) Post #AoX8NFVwdYcroNhbkm by ErikUden@mastodon.de
2024-11-29T11:27:06Z
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Regardless of it all — I hereby ceremoniously announce that my clinical trial story, started on the 2nd of September 2024 is now, more or less, over! The only thing you have have to expect is a short notice whether I was the placebo or not. I thank you all for reading through my journey of taking a multiple sclerosis drug, and hope some day a patient may be cured by using it. Whilst doing research on its side effects they may even stumble upon this thread and enjoy reading my experiences as much as I enjoyed writing them! I don't think there is a better preparation for what is to come when taking this experimental drug, than reading through my blog. No health warning nor fact sheet delivered with this compound could convey the same message, explain all my sorrows, worries, and joy I had with it, as good as a long personal experience. If only one person is aided in their decision on whether to take this or not, then my job is fulfilled!
(DIR) Post #AoX8QT8oQexUwYPxSq by dr_ulli@social.anoxinon.de
2024-11-29T11:27:38Z
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@ErikUden Whenever I try to buy train tickets or to find non-standard connections I am close to smashing my computer:In March this year it took me ~20 minutes to buy ferry tickets from Rome to Sardegna. Train tickets from Munich to Rome took ~4 hours. After filling in all forms the websites of various vendors always crashed when I clicked on the "buy now" Button. The SBB-site I consulted considering to travel via Zürich gave me an explanation, finally: the trains I tried to book did not exist!
(DIR) Post #AoX8fMA8epRxdx8YAy by jacquiharper@mastodon.world
2024-11-29T11:30:19Z
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@ErikUden It was great reading; I appreciate you taking on the narrative on while actually living the research! Much appreciated and well done 🫶
(DIR) Post #AoX8g9SxLecKYVJloG by dr_ulli@social.anoxinon.de
2024-11-29T11:30:27Z
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@ErikUden But it is not a German exclusive problem. Here in my 2nd home, Spain, RENFE can also be a real pain in the neck. To find connections with EUSKOTREN, the basque local rail network, it is best to consult the SBB website....
(DIR) Post #AoX8ja7MiKuK5Dr2EC by Thea_gruen@troet.cafe
2024-11-29T11:31:04Z
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@ErikUden Danke Dir sehr für die Teilnahme und das Reporting🍀 Du lebst Empathie 🙏
(DIR) Post #AoXk6FMBlVyoeuSV5k by GordonFawks@rubber.social
2024-11-29T18:29:48Z
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@ErikUden I must be the luckiest person alive dealing with DB. The only time I had issues was with a strike, and mostly Management being horrendous at updating thing in a timely fashion.
(DIR) Post #AoXkFla5KHfBCrUvfE by Cassiewalter@mastodon.social
2024-11-29T18:31:31Z
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@ErikUden I totally adore seeing your posts, what messaging app are you using?