[HN Gopher] Science YouTuber physicsgirl (Dianna Cowern) stands ...
___________________________________________________________________
Science YouTuber physicsgirl (Dianna Cowern) stands for the first
time in 2 yrs
Author : m348e912
Score : 671 points
Date : 2025-01-29 06:16 UTC (16 hours ago)
(HTM) web link (www.youtube.com)
(TXT) w3m dump (www.youtube.com)
| pogue wrote:
| What was wrong with her? Some type of long Covid or something?
| apetrov wrote:
| https://youtu.be/vydgkCCXbTA?si=bIOBVn1wAsgPVLLr
|
| yeap long covid
| easygenes wrote:
| Yeah, ME/CFS in the extreme.
| TechTechTech wrote:
| Yes, Wikipedia: In July 2022, Cowern reported that she had
| developed long COVID. She was hospitalized in March 2023, as
| her symptoms similar to myalgic encephalomyelitis/chronic
| fatigue syndrome continued to worsen, leaving her unable to
| move
| nickhodge wrote:
| Severe ME/CFS. I am a carer for my wife who has this forgotten
| & hidden disease.
|
| I am so glad Physics Girl is getting better with rest!
| tednoob wrote:
| It seems it is not just rest but that she had some procedure
| done as well.
| https://youtube.com/shorts/ndhu7uo3PrI?si=pPzpDk4lLw3eRf0j
| FlyingAvatar wrote:
| Indeed she was not apparently getting much better until she
| got the nerve block procedure a few months ago.
| omnibrain wrote:
| The state of all things Me/CFS is so bad. I remember reading
| about cases as a child in some boulevard or women's magazine
| at my grandmas house, so it must have been about 25 years
| ago. Seemingly nothing happened since then.
|
| Even the explosion of cases after Covid hit somehow doesn't
| lead to change. In Germany many doctors still don't know it,
| a lot of them think it's psychological.
|
| There is some research, but it looks like the study of the
| promising compound ,,BC007" got botched by bad study design,
| so even after some very promising results in some
| participants it is likely to get scrapped.
|
| ,,Hidden disease" fits it so well, because the people
| affected ,,just disappear", too weak advocating for
| themselves and with potentially every activity leading to a
| crash.
| Vampiero wrote:
| > a lot of them think it's psychological.
|
| no worse feeling in the world than hearing a doctor
| confidently tell you that it's all in your head and that
| you're wasting their time. Ask me how I know..
| rvense wrote:
| "Are you bleeding?"
|
| "No."
|
| "It's probably stress, then."
| em-bee wrote:
| if only we could objectively (and easily) measure pain
| and energy levels (feeling tired) and even stress. stress
| is used here as a dismissal (not by you but the
| hypothetical doctor you are parodying) but stress too is
| a real health factor that people need help with.
| Intermernet wrote:
| Nobel Laureate Barry Marshall (co discoverer of
| Helicobacter Pylori, cause of stomach ulcers) gave a talk
| to a graduating class at the university he went to (can't
| find link, but it's on the net somewhere). He talks about
| "stress" being a fertile area of research for medical
| advances. His argument is that stress is rarely the
| direct cause of anything. It might be a secondary cause,
| or it might be a symptom, but research into ailments
| currently attributed to "stress" is a really good
| direction for the aspiring young medical research
| scientists out there.
| rvense wrote:
| Yeah, sorry, that wasn't meant to be dismissive of stress
| or burnout. There's probably a reason doctors always ask
| about it, but it can be an annoying to have to talk about
| your job when you've got physical symptoms.
|
| (As a sidenote, why do doctors always assume stress is
| work related? Work is fine, but have you looked at the
| world...)
| em-bee wrote:
| _that wasn 't meant to be dismissive of stress or
| burnout_
|
| just to be clear, i knew it wasn't.
|
| _why do doctors always assume stress is work related?
| Work is fine, but have you looked at the world_
|
| oh absolutely so much. i hide in my work when i have
| stress at home. i can think of two factors. as far as the
| world is going, most people don't care enough about it to
| let that stress them, so they do't even see it. myself i
| avoid stress from world affairs by actively working on
| making things better (within my means, by showing my
| friends and neighbors that there is hope yet for the
| future). but there is also stress at home, and that seems
| to be also overlooked. i think the reason here is that
| the doctors are not trained to deal with that and also
| don't want you to come to them to handle your family
| problems. there are other trained professionals for that.
| though personally it would really be nice if we had a
| family doctor who not only deals with physical but also
| mental health.
| scotty79 wrote:
| A hole is just a sign of excessive stress on your skin.
| sterlind wrote:
| it's wild to me, because ME/CFS can, in rare cases, be
| terminal. autopsy reveals various findings: inflammation
| of the dorsal root ganglion, degeneration of the frontal
| lobe, metabolic issues and tangles of proteins in neurons
| and glia.
|
| RIP to the author of "The Sleepy Girl's Guide to SSDI",
| who died young to ME/CFS, attributed to neuroinflammation
| in her autopsy.
| somenameforme wrote:
| Nocebos, the opposite of placebos, are _extremely_
| interesting. [1] The thing most people don 't appreciate
| about placebos (and nocebos) is that the effect isn't
| just 'in your head.' It actually physically manifests -
| people can e.g. recover from illnesses measurably more
| quickly with placebos.
|
| And the opposite is true of nocebos. So for instance one
| of the most common examples of nocebos is somebody will
| be given a terminal cancer diagnosis but then die long
| before the cancer could have been the cause of their
| death. They're so convinced that they're dying imminently
| that it becomes a self fulfilling prophecy. I expect a
| similar phenomena is why elderly couples tend to follow
| each other into the grave in short order. Dying of heart
| break or loneliness is not necessarily just rhetorical.
|
| Basically, the mind is _extremely_ powerful.
|
| [1] - https://en.wikipedia.org/wiki/Nocebo
| scotty79 wrote:
| Doctors used to believe allergy is psychological.
|
| I think there are no actual psychological diseases. All
| have underlying physical causes.
| ndileas wrote:
| I agree with this, as a monist. Unfortunately medicine is
| still very much in its infancy in this regard - many
| things are too subtle or just still hidden.
| dennis_jeeves2 wrote:
| >Unfortunately medicine is still very much in its infancy
|
| It's always the people involved. People are very
| resistant to change and prefer to hang on to the status
| quo.
| dennis_jeeves2 wrote:
| I fully agree with you.
| throwaway9265 wrote:
| I've had a family member (Aunt) who's been diagnosed with
| CFS since the early 90s whos now in their 60s
|
| There is some good research into anti-virals for treatment.
| And this has been known for at least a decade. A challenge
| js few doctors will prescribe the course.
|
| Anecdotally in the late 00s early 10s my Aunt was losing
| mobility due to CFS causing neurodegeneration. It was at
| the point she would sometimes crawl rather than walk up a
| flight of stairs.
|
| Her and I flew to a specialist to get prescribed a cocktail
| of anti virals (most used for AIDS) and the results were
| more than a placebo.
|
| Within a year the degeneration didn't just stop but
| reversed. Its not a cure for her but it allowed her to
| reverse enough to have a high quality of life and mobility.
| Over time she's progressed back down but who's to say if
| thats age or condition.
|
| Here's a link that discusses it, but a search for cfs and
| antiviruals will return cfs community material and
| journals.
|
| https://massmecfs.org/more-resources-for-me-
| cfs/247-antivira...
| anonzzzies wrote:
| It seems no doctor takes it seriously still: just you being a
| whiner and get over it. My mother had it in the 80s and it
| was really not a thing; must see a shrink, she did, didn't
| help of course etc etc. Never got any help besides 'well,
| just rest and don't worry too much'.
| datavirtue wrote:
| I think it has more to do with the doctor thinking about
| the absolute nightmare they are going to have to deal with
| interfacing with insurance companies trying to treat you.
| The dismissal is just their self preservation.
|
| I have noticed that a lot of their job is playing insurance
| games to treat (get past preauthorizations) easily
| documented health issues, let alone things like ME/CFS or
| long COVID.
| chongli wrote:
| That's a US-specific problem. Doctors dismiss patients'
| complaints all the time in countries with universal
| healthcare.
|
| I think the issue is much simpler than that: if the
| doctor is out of ideas (and doesn't know of a specialist
| to refer to) they just get frustrated and give up.
| Sesse__ wrote:
| I am in the process of recovering from CFS (currently back
| to working 100%, though still not being where I want to be
| with everything else) and at no point my doctor has done
| anything but take it seriously. Of course, a doctor can
| only do so much with a disease as nebulous as this, but he
| (as well as work, family and other people around me) giving
| me breathing space and adapting to my situation has been
| crucial for my improvement, I'm pretty sure.
| anonzzzies wrote:
| Good to hear, several people around me did not have that
| experience with covid, but sure there must be good
| doctors.
| Sesse__ wrote:
| It is, in general, a poorly understood disease (as lots
| of others in the thread are pointing out). And
| everybody's case is different.
|
| I will point out that I've never gotten so much
| unsolicited low-quality advice before, though; people who
| barely know me will make a very confident diagnosis on-
| the-spot once they hear I've got a long-term illness.
| E.g., "you're vitamin D deficient" (no, I'm not, and
| anyways, I've been taking vitamin D supplements for three
| months just in case, with no effect). I'm sure they mean
| well, but it becomes tiring really fast when everyone
| does it. (There's a select few people who seem to be much
| more careful about throwing our random crap like that,
| including, unsurprisingly, all the doctors I know.)
| Cthulhu_ wrote:
| I'm seeing the abbreviation ME/CFS in a lot of comments and
| didn't know what it means, but... I'll take the abbreviation
| over "myalgic encephalomyelitis"!
| tednoob wrote:
| My sister had ME/CFS after she had a burnout after her second
| kid. She was never permanently bed ridden but sometimes had to
| spend days resting or recovering after strain. She's not well
| today, but much better than at her worst. There wasn't really an
| accepted diagnose for it when my sister got it, and she had to
| fight to be recognised as sick.
|
| I do wish Dianna the best recovery and future progress.
| triyambakam wrote:
| I would say we don't really know if it's so called Long COVID. I
| mean that I have taken care of an ME/CFS sufferer long before
| COVID was around. So it's a set of diseases grouped by their
| similar symptoms. Autism and ADHD seem similar in that regard
| proto-n wrote:
| The "so called Long COVID" really just means "I got covid and I
| remain unwell in some way, long term". I'm not sure it needs to
| be questioned if those two qualifying things are given. Very
| well might be the same thing as ME/CFS, or might not, I don't
| think we have a conclusive answer yet about what causes either.
| jdietrich wrote:
| "Long COVID" encompasses several very distinct nosological
| categories, which makes it a difficult term to talk about.
| There are at least four distinct subtypes - people who had
| severe acute illness and suffered respiratory injury, people
| who had severe acute illness and suffered cardiovascular or
| renal injury, people who had a relatively mild acute illness
| but developed long-term neurological or musculoskeletal
| sequelae, and people who developed those latter symptoms
| during the COVID pandemic without actually being infected
| with COVID. All of those types of suffering are very real,
| but may have very different causes and require different
| treatments.
| davidt84 wrote:
| Without _knowingly_ being infected with COVID is probably a
| better way to phrase that.
| jdietrich wrote:
| https://journals.asm.org/doi/10.1128/spectrum.02537-22
| 4bpp wrote:
| > The final study population comprised 341 participants
| (90.6% females) who completed blood sampling and answered
| the questionnaire. A total of 232 (68%) were seropositive
|
| How does this compare to the base rate in a similar
| population? Two thirds sounds like a reasonable estimate
| for "ever had COVID" in Denmark in 2022, though maybe a
| smaller percentage would in fact be seropositive. It
| would be interesting if self-reported long COVID had
| little or no correlation with having had COVID at all.
| chmorgan_ wrote:
| note that this is 'self reported long covid'. For a
| proper study you'd need an objective measure otherwise it
| can't be determined what might be long covid vs. fatigue
| from working late hours at work, changes in mood due to
| season, changes due to age etc.
| klipt wrote:
| Yeah a relative of mine had it decades before Covid.
|
| A better term may be "Long Virus" since multiple viruses can
| trigger it, Covid just happens to be the most recent pandemic.
| saalweachter wrote:
| Eh, the advantage of "long Covid" is that syndromes are
| clusters of symptoms without a known underlying cause. "Long
| Covid" may give ME/CFS symptoms, but if you solicit 100 Long
| Covid sufferers for a study, you are more likely to be able
| to find underlying similarities than for 100 ME/CFS suffers.
|
| The results would potentially scale to some sunset of ME/CFS
| suffers neho never had Covid, but it makes sense to start
| with the group we at least have a common starting point on
| the cause.
| GuB-42 wrote:
| That's what I am wondering, is it the right cluster?
|
| Some long covid symptoms are nothing like ME/CFS such as a
| persistant loss of taste and smell. And there are people
| with ME/CFS who never had covid.
|
| Anyways, I am sure that research goes both way, that is,
| studying the consequences of covid and the causes of
| ME/CFS. "meet in the middle" can be a good exploration
| strategy.
| chongli wrote:
| The symptoms may be very different but the causes may be
| similar: permanent damage to tissues and organs which the
| body is unable to heal over time.
| tempfile wrote:
| > Autism and ADHD seem similar in that regard
|
| Do you go around telling people "I would say we don't really
| know if your kid has so-called Autism" too?
| acomjean wrote:
| I think the point being made was diseases can be difficult to
| diagnose. Some diseases don't have explicit tests.
|
| ADHD is diagnosed by looking at just symptoms if I remember
| correctly. I'm not sure about autism.
|
| I knew someone who became sick. At first it was thought to be
| Lyme, it took a long while to determine and a bunch of other
| theories to determine it was lupus. Tests were not fully
| accurate and these illnesses manifest a little differently in
| different people.
| tempfile wrote:
| I am not objecting to the general point that diseases are
| hard to diagnose. The wording OP used does not just say
| that - phrases like "so-called" come with an implication
| that the thing being referred to is just made up. That's
| why my comment asks if they would say the same thing about
| ADHD and Autism. They probably wouldn't, because it would
| carry an implication that they thought ADHD and Autism were
| somehow "fake".
| hgomersall wrote:
| ADHD and Autism are interesting, because they are
| entirely based on certain clinical presentations and the
| opinion of the diagnosing practitioner. There are a
| certain set of traits that are "classically" ADHD for
| example, so what happens if you show 80% of those traits
| and show the counter-case for 20% of the traits? I expect
| that neurodivergence is going to become far more nuanced
| in its assessment, with a better understanding of an
| individual's whole psychological profile.
| krageon wrote:
| You can literally see ADHD in a brain scan, especially if
| you contrast it with after someone has taken the proper
| medication for it. This isn't some sort of witchcraft,
| it's a physical thing that's measurable.
| ghxst wrote:
| That's not how you get diagnosed however, nor do I know
| if you would receive a diagnosis of adhd when a brain
| scan shows behavior similar to that of ADHD but you show
| no symptoms and aren't seeking a diagnosis. If you go in
| for an ADHD evaluation you typically get a psychological
| assessment, potentially do some tests which aren't always
| conclusive and your symptoms will be evaluated. In that
| sense, it's not really measurable in the same way that we
| can test for a specific disease, infection or virus.
| viraptor wrote:
| It's not a strict relationship as far as I understand
| though. As in, frontal lobe issues are visible on many
| brain scans, but those brain scans are not specific
| enough to map onto ADHD diagnosis. So we don't have a
| good diagnostic test right now even though we have many
| population-level confirmed differences that we can run
| tests and statistics on.
| datavirtue wrote:
| In the Cincinnati area they throw up their hands if you
| are over the age of 12 and suspect ADHD. There is little
| to no help if you are an adult or close to it.
| lupire wrote:
| Most of mental health is like this.
| philjohn wrote:
| Autism diagnosis requires (or at least should, for it to be
| done properly) a multidisciplinary evaluation.
|
| In the case of my children, there were certain tests that
| were absolutely definitive, and not reliant on
| interpretation - namely, idioms and metaphors. It's raining
| cats and dogs, for example.
| lupire wrote:
| Right, but that specific sign still doesn't give
| definitive info about all the other aspects of autism.
| Ignoring the name you give "literal-lnaguahe syndrome" ,
| it is unknown if the menu of signs and symptoms is
| diagnostically clustered in imto one label in an
| effective way.
| nradov wrote:
| In some cases we don't really know if your kid has autism.
| Under the DSM-5 criteria there are three levels of autism
| spectrum disorder: 1, 2, 3. Down at the less severe end of
| the spectrum, clinicians often assign different diagnoses.
| One psychiatrist might diagnose a patient with ASD Level 1,
| and then the next day a different psychiatrist might say that
| the same patient doesn't have ASD at all and actually suffers
| from ADHD or something else. It's highly subjective and
| reproducibility is low.
|
| https://peterattiamd.com/trennasutcliffe/
|
| At the more severe end of the spectrum, diagnoses tend to be
| more objective and consistent.
| tempfile wrote:
| I mention elsewhere that I am not objecting to the general
| point that diseases are hard to diagnose. The wording OP
| used does not just say that - phrases like "so-called" come
| with an implication that the thing being referred to is
| just made up. That's why my comment asks if they would say
| the same thing about ADHD and Autism. They probably
| wouldn't, because it would carry an implication that they
| thought ADHD and Autism were somehow "fake".
| Cthulhu_ wrote:
| Weird gatekeeping but ok; COVID causes chronic fatigue syndrome
| in some people. Because so many were affected (millions
| worldwide), it got its own nickname. ME/CFS developed after a
| covid infection.
|
| Modern understanding of autism / ADHD sees the two as part of a
| spectrum of neurodiverse conditions (think of an audio mixer of
| many different traits, more than a side-to-side slider), but I
| don't see the connection with ME/CFS, whether or not it's
| caused by a covid infection.
| mschuster91 wrote:
| > Weird gatekeeping but ok; COVID causes chronic fatigue
| syndrome in some people. Because so many were affected
| (millions worldwide), it got its own nickname. ME/CFS
| developed after a covid infection.
|
| ME/CFS has been around for way longer - prior to Covid, the
| Epstein-Barr virus was strongly suspected to be a trigger for
| it. Unfortunately ME/CFS was (and in many cases still isn't)
| widely known among doctors, so diagnoses were hard to come by
| and treatment even harder.
|
| At least now that there is money flowing into ME/CFS research
| and knowledge about it gets more widespread, "old time"
| ME/CFS sufferers have a perspective now...
| gadders wrote:
| >>COVID causes chronic fatigue syndrome in some people.
| Because so many were affected (millions worldwide), it got
| its own nickname.
|
| It already had a name - post-viral fatigue syndrome. It's
| happened after other viruses before.
| _gnad_ wrote:
| Love her content, hope she recovers fully soon!
| csours wrote:
| Anecdote: Back in October '24 I got Covid. My only symptom that
| stuck around was lack of taste on my tongue (NOT Anosmia, it's
| lack of salty/sweet/sour/bitter response on the tongue itself),
| but only on the right half of my tongue. It slowly got better,
| but last week I lost taste on that side of my tongue again. The
| taste is coming back again now.
|
| Anyway, I have no idea what's going on with me; it's not really
| severe enough to investigate further right now, and my case is
| only the tiniest part related to Dianna's.
| TomK32 wrote:
| Fungi infections can also mess with your taste.
| jesprenj wrote:
| In circa 2022 I got covid and lost smell. First I couldn't
| smell the spices in the kitchen, but I thought nothing of it.
| But some days later, I couldn't smell WD-40. That's when I
| noticed I can't smell anything at all. My sense of smell never
| really recovered. After about a year, I could faintly smell
| menthol. Now I have to really try hard if I want to get some
| faint sense of smell, but a lot of time I just don't smell
| anything.
| mavamaarten wrote:
| I completely lost taste and smell around 2022 too. It wasn't
| like a clogged nose, I could absolutely not sense anything
| with my tongue and nose (except for touch). I read stories
| about it not coming back for some people and it absolutely
| shook me. At that moment I realized how much I love delicious
| food and that smell is a great indicator for things you might
| not expect (e.g. heat).
|
| It luckily fully came back in my case, but it took many
| months. But it was properly scary! So weird that a viral
| infection (that didn't even make me very sick) could have
| such long-lasting and potentially life-altering effects.
| drooopy wrote:
| I got covid once back in the summer of '22. I had high
| fever (40C) for two days but my taste and smell were gone
| for an entire month. Losing two of my five senses for so
| long was something I never want to experience again.
| penjelly wrote:
| take a flashlight to your nostrils in a dark room with a
| mirror, are they inflamed? It could be reflux/silent reflux
| like I have, gases inflame the sinuses, then it's hard to
| breathe.
| codr7 wrote:
| For any sinus inflammation issues, I would recommend trying
| Neti.
|
| I had more or less constant inflammation growing up, two
| weeks of daily Neti solved that problem for good.
| penjelly wrote:
| that didn't work for me. It helped in the moment but
| didn't address the underlying problem.
| codr7 wrote:
| sorry to hear that, good luck
| stuff4ben wrote:
| Same. Lost both smell and taste for a few days after I got
| COVID in 2021. My taste came back quickly, but my sense of
| smell took longer to come back and is still probably about
| 50% diminished. I can't smell things from a distance, only
| up-close or if it's really strong. Like I can't tell if my
| house stinks because my garbage needs to be taken out, but I
| can smell it up close. I've just relegated myself to not
| being able to smell much anymore which I guess is better than
| some of the other Long COVID symptoms out there. I do miss
| smelling things though.
| A_D_E_P_T wrote:
| Zinc is a critical cofactor for enzymes involved in the
| regeneration and function of taste receptor cells. These cells
| have a high turnover rate, and zinc deficiency can impair their
| renewal. Zinc supplementation is usually the first line of
| treatment in taste disturbances, especially when nerve damage
| is not suspect, and it's often effective. See, e.g.:
| https://www.sciencedirect.com/science/article/pii/S246854882...
|
| Also: https://pubmed.ncbi.nlm.nih.gov/23305423/
|
| It's possible that covid infection somehow disrupted zinc
| homeostasis. Taste receptor cells also express ACE2, which is
| what the virus tends to latch onto... I suppose a feasible
| mechanism -- or at least a hypothesis -- is that viral binding
| to ACE2 may have downregulated zinc-dependent signaling
| pathways (for e.g., those involving metallothioneins or zinc-
| finger transcription factors).
| MeruMeru wrote:
| Happy for her, hopefully her recovery will keep progressing
| jjallen wrote:
| So great to see and hear. I honestly did not think this was going
| to improve and expected the worst. Very glad to see otherwise.
|
| Unfortunately I experienced a similar thing though much milder
| and shorter last summer.
|
| Hope we can figure out viruses better soon!
| y-curious wrote:
| For the sake of society, let's hope it's "let's figure out how
| to defend against viruses soon" and not "let's figure out how
| to make more fun gain-of-function viruses!"
| bschne wrote:
| :')
| user568439 wrote:
| Long Covid (probably a form of ME/CFS triggered by Covid) is one
| of the worse diseases one can get. It invalidates you as a person
| physically and mentally and there are no solutions around. At the
| same time you are gaslighted by doctors and people because there
| is no clear diagnosis.
|
| My wife is already on her 3rd year and I just could witness first
| hand how shallow is the knowledge of most doctors, how they have
| zero curiosity or enthusiasm to help and especially in Europe,
| how are they extremely averse to try anything with the "do not
| harm" in mind.
|
| They think that doing nothing is better than trying a non-
| approved treatment and I'll put an example. My wife had a
| respiratory tract infection back in October which probably got
| while going to the GP by the way. With Long Covid her immune
| system seems very compromised, she never leaves home if it's not
| imperative because even with a wheelchair is too much effort. I
| don't attend almost any social event and I take a lot of
| precautions. Anyway, with the infection she was coughing blood
| for 3 days and then she was unable to breath properly, having
| drops of oxygen saturation down to 86% and waking up breathless
| in the middle of the night.
|
| She documented her symptoms very well including her saturation
| measurements. The GP just told her to wait for a few weeks for
| full recovery and everything will be back to normal and he
| literally said he had no time to read her notes. She asked please
| to get an oxygen concentrator or at least be sent to a
| pulmonologist. This request was denied and of course the only
| option she had was to buy the concentrator on her own which
| helped a ton. Probably if she got it the 1st year she would be
| much better by now.
|
| She is taking like 10 supplements and medications, she is using
| infrared light, oxygen concentrator, wheelchair, special pillows,
| asthma inhaler, etc... All this helps her to have a bearable
| existence but guess what, not a single thing was proposed and
| prescribed by the doctors. Almost everything she takes is based
| on small studies from internet and experiences from patients.
| Mostly from the USA where doctors are much more open minded and
| willing to take risks which is necessary when your default
| baseline is almost like being a tetraplegic with dementia and
| chronic pain.
|
| She has to get pretty harmless drugs like Sulodexide (a blood
| thinner) from other countries in a shady way because the Doctors
| in the Netherlands won't even prescribe this.
|
| There is some progress in diagnosis or biomarkers detection and
| some promising studies for cures like monoclonal antibodies,
| antivirals and others. But meanwhile it's a pure nightmare to
| live with Long Covid.
| the-dude wrote:
| I was halfway through your comment and wondered which country
| this would be. Well, hello fellow Dutchie.
|
| Since my father's death, I say _In the Netherlands, doctors
| only start acting when you are dying_.
|
| My father's GP let him die of acute leukemia, guessing his
| severe tiredness had something to do with an onset of diabetes.
| It was not a single visit. Had no bloodwork done. GP claimed to
| be specialized in geriatrics. My father was 63.
|
| About a day after his last visit my mom took him to the ER,
| which did bloodwork, and a couple of days later he died ( they
| tried an emergency chemo ).
| dinkblam wrote:
| > In the Netherlands, doctors only start acting when you are
| dying.
|
| this horrible situation is in no way restricted to the
| Netherlands.
| lnsru wrote:
| There is obviously whole medical system for cash paying
| upper class. That's why I am trying to have some cash on
| hand for medical emergency. Few thousand euros can make a
| difference of 50 years in treatment methods here in
| Germany. The outcome may be massively better this way.
| Sadly I learned this lesson the hard way.
| miningape wrote:
| This is what pisses me off about public medicine. If
| you're going to provide a service that's so bad I have to
| save for a private doctor anyway, why in the hell am I
| paying so much in taxes towards it? Out of the goodness
| of my heart for others (so they can also receive shitty
| care)?
|
| And yeah the dying comment is 100% true for Denmark too.
| The doctors have no clue about what preventative
| treatment is and will just let it fester into something
| more serious they're forced to treat - diabetes is a huge
| example of this.
|
| From personal experience, I was left waiting for a
| testicular cancer biopsy for over a year. After the
| operation I found out if I did have cancer there was a
| high chance the biopsy would've caused it to progress
| much more rapidly (as opposed to other methods of
| checking). So great you let the cancer grow in my nuts
| for a year, and then you make it more aggressive? wtf??
| Thankfully I was diagnosed cancer free.
| ajsnigrutin wrote:
| Yep, same in slovenia.
|
| We pay a lot of taxes for healthcare insurance, and the
| primary level of healthcare is totally fscked. When the
| employer has to deduct the insurance from your paycheck,
| even goddamn cent is double checked by the government...
| when your primary care physician quits/dies/retires, well,
| "sorry, there are no doctors taking new patients in your
| area". Further away? Nope. Somewhere finally a new doctor
| starts and accepts new patients... this: https://images.24u
| r.com/media/images/1106xX/Sep2024/5916255a... (yes, this is
| the line of people without a primary doctor trying to get
| one).
|
| So, fever, general unwell feeling... could be a flu.. could
| be bacterial.. probably just a flu.. or a cold... it's
| always just a cold.. but are you sure? You could go to a
| private doctor, pay for the checkup, pay for the blood
| work, but will you pay if it's probaby just a cold/flu?
|
| Feeling really bad and also start vomiting + diarrhea? Go
| to the only place where you can get checked out fast... the
| emergency room... and then emergency protocols have to be
| implemented there, because there are too many people there,
| and they can't handle it.
| SpaceNugget wrote:
| I'm very sorry to hear that your father died a preventable
| death.
|
| I'm currently in a Dutch hospital, recovering from an
| (attmpted, they ended up leaving it inside me, can't fully
| explain why) appendectomy. From calling the after hours
| huisarts number with a stomach ache to being on the operating
| table was less than 24 hours for me. The hospital stay have
| been amazing and I doubt I would have had such prompt
| treatment back in Canada.
|
| But I have also had to argue with the receptionist for over
| 10 minutes to be able to speak with my GP here for a consult
| after I paid for private bloodwork with two critical results
| and 6 out of normal range... So I feel like it's down to luck
| here when they decide to take things seriously.
| nradov wrote:
| I don't know what happened in your case but the standard of
| care for simple appendicitis is now to try a course of
| antibiotics first before a surgical appendectomy.
|
| https://www.facs.org/media-center/press-
| releases/2021/coda-s...
| SpaceNugget wrote:
| I'm currently on a course of antibiotics. They said the
| tissue around the appendix was to infected and they were
| scared they would rip it and damage something. They are
| giving me the option to have the appendectomy after I
| successfully recover with antibiotics but advise against
| it. I wish we had started with the antibiotics but here
| we are now.
| bo0tzz wrote:
| GPs here are just absolutely useless. Have you tried reaching
| out to one of the specialized clinics? I've been under
| treatment for ME/CFS at Vermoeidheidkliniek (yeah, not the best
| name) and all of the specialists there have been incredibly
| helpful and willing to try different things.
| user568439 wrote:
| They don't have very good reviews in Google but I can give it
| a try. My wife is in the queue for the new "Long Covid
| Clinics" but who knows when there will be room... they opened
| in November and we didn't hear anything else since then.
| 1R053 wrote:
| that is a horrible way to be treated by a doctor. In Germany
| you have free choice of your doctors. Although sometimes you
| have to wait quite a bit to get appointments... I am not sure,
| but with a a European health insurance card you should be able
| to also go to doctors in other countries and be at least
| partially covered by your insurance.
| michh wrote:
| Another Dutchie here.
|
| Anything not immediately fatal is indeed treated by just taking
| it easy and perhaps some paracetamol for the placebo effect.
|
| I have a chronic illness in the same kind of category and it
| took me years to find out what it was and to get proper
| treatment. Which has improved my quality of life
| _dramatically_!
|
| But even now I travel halfway across the country to a
| university hospital where a specialist takes me seriously, the
| GP is still a bit 'meh whatever'. I'm fairly sure he put a
| "psychosomatic/hypochondriac" flag on my file and never removed
| it when the specialists diagnosed me.
|
| Our healthcare system has overcorrected on what they dismiss as
| 'aanstellerij' en 'Amerikaanse toestanden' and many in the
| field are actually quite proud of this.
| BobbyTables2 wrote:
| Are you sure you aren't in the US?
|
| I find specialists here have zero intellectual curiosity.
| Sure, they recognize the most common condition in their field
| when blatantly obvious.
|
| When it comes to the second most common issue in their field
| or anything not blatantly obvious (significant test result
| and 10/10 excruciating pain), they will just offer no
| diagnosis and go no further.
|
| Just getting them to do an exam or even order a test is a
| huge challenge...
| michh wrote:
| The first one I saw was like that. But I went for a Second
| Opinion, as is my right, and it was a world of difference.
| IX-103 wrote:
| It seems to depend on who you see and, probably, where you
| are in the country. Every time I go in to see my GP he
| seems to schedule a battery off lab work. And when I went
| to a dermatologist for an annual mole exam I left with
| prescriptions for dandruff and eczema.
| qiine wrote:
| model for the infrared light ?
| cma wrote:
| Did she get on the unprescribed Sulodexide before coughing up
| blood? That could have caused it.
| dpz wrote:
| One of my dearest friends suffers from ME/CFS - she's been bed
| ridden for 3 years now. Any stimulation is just so painful her.
| Seeing Dianna actually able to get out of bed has brought a bit
| of hope back into my life
| tunn3l wrote:
| I'm 22 years old and suffer from Long COVID for 3 years now. I've
| written a bout my experience on my blog: https://tunn3l.pro.
| although not bedridden, my life got totally flipped upside down.
| I just want to live a normal live again. To all ME/CFS and LC
| sufferers: Don't give up!
| jddj wrote:
| You write very well, and there are some nice insights in there.
| I clicked through out of curiosity but ended up reading a lot.
| krageon wrote:
| I have had the same issue for about as long and it's been a
| bear of a time to get anything done with it. Kudo's to you for
| taking a trip to have a treatment that might work done! It is
| very hard to take a lot of initiative and keep pushing (at
| least for me) with long covid.
| penjelly wrote:
| Hi, I couldn't glean from the articles. But it sounds like you
| have breathing issues from long covid? it may sound ridiculous,
| but I developed gluten/lactose sensitivity during covid times.
| If I avoid gluten, lactose, canola oil I get far fewer
| symptoms. I know this likely isn't your issue but I do
| experience positive airway pressure, coughing, burping, chronic
| fatigue, exessive yawning. If that sounds like you maybe a
| dietary intolerance could be worth checking. For what it's
| worth, no doctors could diagnose me, they thought I had
| heartburn or "its in your head". It wasn't, cutting those
| things out did actually help enormously.
| qiine wrote:
| > _" its in your head"_
|
| insane that it's still so common...
| dylan604 wrote:
| Seems to me like that would be the number one offered
| advice when you get less than five minutes of time with a
| doctor under typical US doctor visits. Seems like a very
| convenient way to cycle patients through faster. The only
| downside is there's not really any scripts you can write
| which lowers your quota for which ever bigPharma the doctor
| has sold their soul
| mikeyouse wrote:
| I really get the sentiment that if you look at people who
| are told "it's all in your head" and then they find some
| obscure condition that is treatable, it might be considered
| borderline malpractice for the physician to have told them
| that... but does the frequency with which patients are told
| that maybe give some insight into how many psychosomatic
| patients there really are out there?
| carom wrote:
| I don't think so. I have literal objective tested
| allergies and people ask me if I think the symptoms
| (allergic rhinitis) are psychosomatic all the time. So
| many people I talk to have real symptoms and down play
| them as probably having some mental component.
| parrellel wrote:
| I mean, we had actual doctors doing the "In your head"
| song and dance before my wife was diagnosed with RA for a
| good 3-4 months. There was visible swelling/blistering
| and she couldn't walk unassisted. This is an anecdote of
| course, but, this was a very obvious condition, and we
| got "in your head"ed.
| II2II wrote:
| In my mind, that doesn't make the symptoms any less real to
| the person suffering from them and does absolutely nothing
| to remedy the situation. Even if it is in the person's
| head, any doctor offering that advice should be facing
| consequences for not offering a legitimate path for
| treatment.
| burntalmonds wrote:
| Many conditions aren't well understood and simply don't
| have effective treatments.
| II2II wrote:
| My apologies if my comment sounded insensitive towards
| people who have real physical ailments, but there are
| cases where psychology may play a role and I firmly
| believe the medical system should take responsibility for
| those cases rather than shrugging them off and leaving
| the patient to figure it out on their own. First and
| foremost, they are leaving the patient suffering. Then
| there are other factors to consider, ranging from
| patients seeking out ineffective and unproven treatments
| for something that may not have a physiological basis to
| something having a physiological basis not being
| diagnosed because it was dismissed as having a
| psychological basis.
| kkarakk wrote:
| They do - we call them therapists and they are on the
| hook. Medical doctors deal with BODY related issues.
| Wobbles42 wrote:
| I'm not a medical professional, but as a firmware
| engineer I do bristle a bit at the suggestion that
| "hardware" and "software" problems can be so cleanly
| separated.
| tartoran wrote:
| "it's in your head" diagnosis is when the medical
| establishment gives up and outsources the treatment to the
| patients themselves and that quite often does not end up
| well for the patient regardless of the true cause of the
| illness.
| fragmede wrote:
| it's in my head but guess what? _that 's where I live!_ I
| didn't think my way into this particular problem and I
| can't think my way out this particular problem and I need
| external help to get back to normal.
| DamnInteresting wrote:
| > _I developed gluten /lactose sensitivity during covid
| times_
|
| Same here, at least in regard to gluten. I was in my mid-
| forties, and I started experiencing painful bloating that
| often led to difficulty breathing, and after an hour or so of
| pain, vomiting. The involuntary 'protein spill' alleviated
| the pain of bloating, but I was left exhausted for the
| remainder of the day.
|
| At first, these episodes occurred about once every 2 weeks,
| but they grew more and more common over a few months, until
| it was a nearly daily occurrence. I had become overweight
| (I'm still working on that), so my doctor concluded that I
| just needed to lose some body fat. It felt like there was
| something more serious more going on, but US health care.
|
| Weeks later, I stumbled upon a science article describing how
| millions of people develop gluten sensitivity later in life.
| It described familiar symptoms and progression. As an
| experiment, I tried eliminating gluten from my diet (which is
| tricky, that stuff sneaks into surprising places), and I felt
| much better within a few days.
|
| In the ~2 years since, I've had a few episodes, but I can
| almost always find a place where gluten snuck into my food
| (e.g., a taco place that added flour to its corn tortillas).
| On one occasion, I deliberately ate a bit of bread, and sure
| enough, 30 minutes later I was begging the porcelain gods for
| forgiveness.
|
| I miss real bread, but for me, the blowback isn't worth it.
| penjelly wrote:
| 100%. it took me years to consider gluten/lactose as the
| root cause, because I'd been eating them for years and
| definitely never almost suffocated like the symptoms it
| causes now for me now.
| mwpmaybe wrote:
| Anecdotally I went through a severe bout of IBS-C in my early
| 20s and the "cure" was to cut out wheat and dairy for an
| extended period of time (about a year and a half), at which
| point I was able to reintroduce them into my diet and I've
| been ~fine for about 20 years now. I've hypothesized that the
| lining of my intestine(s) had been damaged by the proteins
| and/or starches/sugars in those foods and needed a break and
| time to heal. I'm not a medical professional and my
| hypothesis has never been confirmed by one.
| rafram wrote:
| I had a similar experience with dairy. (Wheat is still
| out.) It used to give me severe digestive symptoms and
| inflammation, but after cutting it out for a year or so,
| I've been able to reintroduce it without any noticeable
| symptoms. No GI I've seen has really had answers for me,
| and I'm not really interested in seeing an "alternative
| medicine" doctor, although I'm sure they would claim to
| know what's going on. But I'd recommend trying an
| elimination diet to anyone who has unexplainable symptoms
| in that vein. The limitations are annoying at first, but
| you get used to it.
| throwforfeds wrote:
| My wife and I got Covid during the first major wave
| (March/April 2020). I had no symptoms at all, but my wife
| ended up getting long Covid. GI issues, extreme tiredness,
| shortness of breath, brain fog, sleep disruption, etc etc.
| She lost maybe 10-12% of her body weight.
|
| After maybe 8 months of this we somehow decided to do a low-
| Fodmap diet (I participated for support). That included
| cutting out gluten and dairy (except butter). She healed
| right up. When we were re-introducing foods, for whatever
| reason, mushrooms and garlic both had negative effects, and
| we ended up keeping both out of our diets for a couple years.
|
| Anyway, that's all to say I'd recommend people seriously look
| at their diet and try to spend a month or two doing low-
| fodmap if they're chronically suffering from long Covid.
| Worst case it doesn't help.
| Wobbles42 wrote:
| Yet another anecdote, but my wife and I both got COVID. I
| was quite a bit sicker than she was.
|
| I later found out that I'm a type II diabetic, and almost
| certainly was at the time I had COVID given the timing. I
| had fairly severe fatigue symptoms preceding that
| diagnosis, and the diet/exercise changes I made to bring
| that under control look a lot like what your wife did, and
| also seem to have alleviated the fatigue.
|
| There was about a 12 month separation between recovering
| from COVID and my own fatigue symptoms. Had the timing been
| a bit different I likely would have assumed I was suffering
| from long COVID, and would probably have been less inclined
| to see a doctor as a result.
|
| None of this is to suggest that any given person is
| suffering from diabetes, that long COVID should be treated
| the same way, or that any given person with long COVID is
| self diagnosing. For anyone that is though, definitely
| consider talking to a doctor. Coincidences happen and you
| could have something that is both unrelated and treatable
| going on.
| simondanerd wrote:
| I know two people that are just now getting out of bed and able
| to do basic things, both diagnosed with Long COVID. Knew
| another that was sick for a year afterwards, and my brain can't
| hold info like it used to. It's ugly when it gets a hold of
| you, that's for sure.
| teebSQAD9 wrote:
| I've had it for a few years too, it's really hard, hang in
| there!
|
| If you want another thing to try, I found that temporarily
| wearing a nicotine patch [1] helped a lot. But it seems like it
| doesn't work for everyone.
|
| [1] https://pubmed.ncbi.nlm.nih.gov/36650574/
| lawlessone wrote:
| This is interesting, (anecdotally) i have heard of people
| using nicotine patches for ADHD, and i've also (anecdotally)
| heard of ritalin etc being used to help people with CFG.
| garganzol wrote:
| I do not have full statistics, but people who smoke
| cigarettes are less prone for developing post-covid,
| according to the statistics I have.
|
| My immediate thought back then was is that nicotine somehow
| plays the role of NAD (= B3 vitamin), thus fixing one of the
| core mechanisms of acquiring mitochondrial dysfunction after
| the covid (NAD deprivation).
| gbalint wrote:
| It's a long shot, but my mild long covid symptoms practically
| disappeared since I've been taking MCT oil regularly. I was
| motivated to try it after reading this article:
| https://pubmed.ncbi.nlm.nih.gov/37415915/.
| mwpmaybe wrote:
| What's your regimen look like?
| mentos wrote:
| For what it's worth I had bad nerve pain from Covid and only
| thing that helped was weight lifting and a carnivore diet. I'd
| put more stock in the weight lifting though. I believe an
| increase in testosterone helped regulate my immune system. From
| what I understand women suffer more from auto immune diseases
| than men (at least it's the case with MS) so maybe weight
| lifting is part of it.. good luck.
| BargirPezza wrote:
| I have been burnt out for almost three years now, was mostly
| bedridden at first but I can do much more now. I can do moderate
| training 1-2 times a week, go out to get socialization 1-2 times
| a week and do much more at home. So it have gotten better, just a
| very slow pace and it's really hard. You have to learn to know
| when you have to rest and when to push yourself and that line can
| be super thin. Not good to do too much and not too little, very
| hard to read signals imo.
|
| Hopefully we will see more breakthrough in understanding and
| reading the signals of the body in the future
| aquir wrote:
| I'm following her progress on Patreon and the fact that she's
| getting better is great! Can't wait her comeback video!
| dataengineer56 wrote:
| I find it interesting that she's both kept her Patreon up
| during this time and has also become far more successful
| https://graphtreon.com/creator/physicsgirl, in spite of posting
| no content.
| TreetopPlace wrote:
| This is honestly shocking and I don't know how to process
| this information.
| viraptor wrote:
| Why is that shocking? Her existing subscribers continued to
| support her, but also multiple other famous youtubers
| talked about her which got her new attention/subscribers.
| I've seen at least 3 other channels giving her a dedicated
| video and YouTube is still serving me her shorts.
| lupire wrote:
| Subscriber is the technical term but really it's donor,
| because they aren't paying for access to new work
| product.
|
| Most people who suffer a GoFundMe-type catastrophe don't
| attract new long-term financial backers over time.
| xyst wrote:
| What's more "shocking" is how these services
| (patreon,gofundme) essentially acts as long term disability
| and health insurance plans.
|
| American healthcare is a massive price fixing scam and a
| complete joke.
| gadders wrote:
| I'm not saying it's a grift, but I'm not saying I'd be
| surprised if it turned out to be one as well.
|
| Internet people are _weird_. Not all of us though,
| obviously.
|
| https://en.wikipedia.org/wiki/Belle_Gibson
| fragmede wrote:
| Is it really a grift if the person is upfront about
| asking for money to pay their medical bills and there's
| no expectation of a product that isn't being delivered?
| GoFundMe isn't pretending that there's a laptop or shoes
| or something expensive and then not delivering aka a
| scam, it's straightforwardsly asking for money to pay for
| medical bills.
| gadders wrote:
| I meant "grift" in the sense of the illness could be not
| real or exaggerated.
| xyst wrote:
| So patreon essentially acts as a health insurance and long
| term disability plan? I am unsure of "estimate earnings per
| month" accuracy given the wide range -- "12K-147K" -- but
| even at the low end that should be enough to get constantly
| seek treatments (traditional and non-orthodox) and still
| provide for basic necessities (food, rent, bills, ...).
| American health system is a joke.
|
| Glad she's making progress and has a very supportive partner.
| Not sure what he does for a living but seems like he has been
| the primary care giver throughout this.
| nozzlegear wrote:
| > American health system is a joke.
|
| I don't disagree, but having some kind of medical situation
| isn't a prerequisite for gaming the Patreon system. I used
| to be a monthly patreon subscriber to someone years ago who
| put out weekly asmr videos. One day they just stopped cold
| turkey with no announcement, yet years later their Patreon
| is _still_ up and still taking monthly donations.
| kkarakk wrote:
| Patreon fundamentally is a way to support your favorite
| artist.Be a PATRON of the arts. Some(most?) creators use
| it as an ad-hoc subscription method but it really isn't
| what Patreon is fundamentally built for.
|
| if you're complaining about subscriptions that go into
| perpetuity your first target should be app stores that
| set up 10 year recurring payments in the biggest chunk
| possible for something you'll probably use for a couple
| of months before forgetting about.
| Tade0 wrote:
| That's great to hear. I remember Simone Giertz breaking out the
| bad news to her followers and sounding no less serious than when
| she was talking about her own brain surgery.
|
| My former co-worker got COVID twice, as preventive measures
| didn't fit into his moral framework, and the second time resulted
| in a mild case of long COVID. I'm saying "mild" as he was not
| bedridden, but the cognitive decline was noticeable.
|
| Long COVID is no joke and seriously affect one's work as well
| private life.
| Suppafly wrote:
| >I'm saying "mild" as he was not bedridden, but the cognitive
| decline was noticeable.
|
| I've noticed some of that with family members that have gotten
| covid, but it's hard to say that it's definitely that as they
| are older and age related decline is hard to nail down too.
| Tade0 wrote:
| My co-worker reported general "brain fog" - very much like
| due to prolonged sleep deprivation.
|
| No false memories or loss of perception of time like in my
| older relatives going through age-related cognitive decline.
| mywrathacademia wrote:
| I have neurological abd muscular issues after covid
| 2-3-7-43-1807 wrote:
| I'm also experiencing mild but annoying symptoms resembling
| arthritis and chronic fatigue since my corona vaccinations
| (biontech/pfizer).
| anshumankmr wrote:
| my heart skipped a beat reading her name, thought something
| untoward happened but good to see she is back on her feet,
| literally. I donated a couple of bucks when that video of her
| illness came out. Very happy to see she is better now.
| teebSQAD9 wrote:
| I've had long covid for a couple of years now. It's a really
| difficult disease, in part because different people react very
| differently, and there may even be multiple mechanisms so it's
| not exactly a single disease.
|
| What has really helped me has been wearing a nicotine patch
| occasionally. I was never a smoker, but I came across this very
| small study [1] and thought it was worth a go because a) I was
| getting desperate and b) nicotine in such low doses is not that
| risky (7mg patch, worn for 2 weeks).
|
| I know there's counter-studies suggesting nicotine doesn't help
| with resistance. My experience is anecdotal, but I saw rapid
| improvement in cognition and fatigue level (particularly post-
| exercise). My guess is that for some people the particular
| mechanism behind their long covid is one that this can help with,
| but not for everyone.
|
| [1] https://pubmed.ncbi.nlm.nih.gov/36650574/
| armchairdweller wrote:
| That nicotine patches help with focus is no surprise if you
| have been naive to nicotine before. I have been using patches
| on and off (like years of no usage in-between) for focus, and
| 7mg is actually a lot. Is there anything indicating that it is
| not just the effect of nicotine, and truly helps against
| whatever lingers inside your body (the spike protein)?
|
| Given other people around me talking about treating their _long
| covid_ with nicotine since it went through social media last
| year, I suppose you don 't know about / didn't try the Natto
| (nattokinase) [1] / NAC route [2] (for which there were early
| studies showing they can dissolve the SARS-Cov2 spike
| protein)..? Or does the community consider that a dead end by
| now?
|
| That there is a political echo chamber-driven division between
| those routes is a bit strange and dangerous, isn't it. With
| nicotine you will need to be careful about its effects on blood
| pressure, and it would be better to not even think about vaping
| (some of the flavoured products could be equally/more addictive
| to/than cigarettes [3]).
|
| [1] https://pmc.ncbi.nlm.nih.gov/articles/PMC9458005/
|
| [2] https://pmc.ncbi.nlm.nih.gov/articles/PMC9663386/
|
| [3] https://pubmed.ncbi.nlm.nih.gov/31536738/
| teebSQAD9 wrote:
| Good questions, and I don't have great answers.
|
| 7mg was the weakest patch I could get at a pharmacy (in the
| UK), and as I understand it that's the release over 24 hours;
| I wore them only during the day so it's a lower dose. If it's
| proportional it's ~5mg, which is 2-3 cigarettes, but
| cigarettes deliver it much faster, I believe. I have since
| spoken to a doctor who suggested that if I relapse I should
| cut them in half to lower the dose. Did you do something like
| that?
|
| The main reasons I think it had more than just a
| concentration-enhancing effect are a) the effect after 2
| weeks of patches seems to be long-lasting (months, at least)
| and b) my post-exertional fatigue, which was fairly severe
| (going for a light jog would leave me partially bedridden for
| a couple of days) has also gone. But to be fair, if the
| fatigue is caused by nervous system dysregulation then
| perhaps that somehow accounts for it, and it's equally
| possible both these effects will wear off in time.
|
| I have not seen nattokinase mentioned before, thanks.
| Interesting that, aside from the effect on the spike protein,
| it's also supposed to help prevent blood clots. A friend with
| long covid was enrolled in a study which treated micro blood
| clots and she saw significant improvement from that. But I
| was tested a couple of times for micro blood clots and it
| came back negative, so again I think the long covid mechanism
| is not consistent.
| armchairdweller wrote:
| I've always bought the flat matrix patches so I could cut
| them into pieces -- worked well for keeping things in
| limits. If it works for you this is good to hear of course
| - I wanted to share my2c of skepticism since for above
| reasons I was suspicious about the hype around it. Btw, if
| you google a bit deeper you will find a 2020 trial on
| clinical personell wearing the patches since there were
| signs it reduces covid infections, so there were early
| signs that nicotine might help.
|
| As for nattokinase, I'd recommend looking around for
| diverse real-life experiences (I believe actual studies on
| long-COVID patients are still lacking). I'm not up to date,
| but I remember many people went straight for (Amazon-
| sourced) nattokinase supplements, and for some, it was too
| much and it made them feel ill.
|
| Otherwise (not sure whether this would deliver the
| therapeutic dose you might need) natto itself makes a good
| breakfast -- traditionally on rice with a runny egg, but it
| works as beans on toast too. Good Asian markets carry it in
| their freezers, imported directly from Japan (buy the
| versions with soy sauce / mustard). I had it regularly
| while I was over there, and there's no difference in taste
| or effect (comparable to a small dose of aspirin). To the
| best of my knowledge, deep freezing isn't an issue with the
| ingredients.
| teebSQAD9 wrote:
| I think skepticism is really sensible with all of this -
| if there's multiple mechanisms and confounding factors
| this is all going to take a lot more study to tease out.
| I was skeptical myself, but tried it because the downside
| risk didn't seem too high, and I'm very grateful that it
| worked so well for me personally.
|
| That's cool - I'll definitely try adding some natto to my
| diet!
| smallerfish wrote:
| Since it hasn't been mentioned yet, I had two debilitating flare
| ups of EBV (Epstein Barr Virus) post covid. It's commonly latent
| (apparently 90% of humans carry it) and will opportunistically
| flare up when the immune system is compromised. It commonly
| causes mono in teenagers, but more generally will cause crushing
| fatigue and related symptoms. There are no known cures, but
| plenty of things you can do to support the immune system. It can
| be detected with a blood test. If you think you have long covid,
| get an EBV test - might help.
| jwr wrote:
| This is such great news! The best news of my day. She is standing
| in a brightly lit room and smiling! This is so much better than
| her condition before.
|
| Keeping my fingers crossed for a quick recovery!
| declan_roberts wrote:
| I was expecting some paralyzed person walking but it's just a
| video of someone with chronic fatigue syndrome standing up.
| perching_aix wrote:
| Really happy for her. Any details about what resulted in this
| breakthrough? Checked the video comments / description but didn't
| see anything.
| garganzol wrote:
| We already had deeply insightful discussions on this topic here,
| but I will repeat for new HN people.
|
| Covid-19 tends to cause post-viral complications, which manifest
| themselves as chronic fatigue, body temperature dysregulation,
| air hunger / shortness of breath with SpO2 of 99%, various
| neurological symptoms: pain/tingling/numbing sensations in the
| extremities, parosmia (a distorted sense of smell), parageusia (a
| distorted sense of taste), difficulties swallowing, cognitive
| decline.
|
| According to numerous trials and errors by different people, it
| was collectively concluded that the condition is caused by some
| kind of metabolic impairment that presumably affects the ability
| of mitochondria to produce the adequate levels of ATP. As a
| direct consequence of that insufficiency, the immune system gets
| activated and starts to attack body's own tissues. When this
| happens, the blood vessels start to develop micro-clotting,
| causing blood flow problems that exacerbate metabolic issues even
| further. Additional tell signs are increased HOMA-IR and/or
| triglycerides in the blood work, suggesting that cells of the
| body cannot utilize the nutrient substrates in full.
|
| This represents a vicious cycle of a typical post-Covid
| pathology. The good news is that it can be treated and healed.
| The bad news is that it may take some time (months, years) and
| will power, while medical workers around the corner have no clue.
| The core of therapy consists of a light immunosuppression in
| conjunction with therapeutical doses of specific vitamins and
| vitamin-like substances, all being supported with minerals,
| vitamin-rich diet, good rest, good sleep, mild physical and
| mental activities every day.
|
| For those people who still suffering from it, I am putting a link
| to a site [0] that aggregates some first-hand evidences and
| research information. A usual note of caution is that every
| situation is different and you should consult your doctor.
|
| [0] https://hormonesmatter.com/?s=covid
|
| Edit: "collectively concluded" is used in the sense that post-
| covid suffers were able to gain observable improvements in their
| condition being "a collective of people" suffering from post-
| covid.
| throw38489595 wrote:
| Some people have high levels of COVID-19 spike protein, long
| after main infection is gone. There is very easy way to test
| for it.
|
| Some retroviruses like HIV are able to modify DNA, and embed
| themselves into cells permanently. Perhaps COVID-19 is doing
| something similar! It would be nice to do DNA scan, for
| sequences that produce spike proteins, on people with long
| COVID symptoms!
| garganzol wrote:
| Yep, something like spike protein that is more persistent
| than usual may provoke an inadequate immune response in the
| body, which is known to cause clotting, which is known to
| cause tissue hypoxia, which, in turn, is known to induce a
| mitochondrial dysfunction, starting the vicious cycle of
| pathology.
|
| Chicken and Egg dilemma. We have a lot to discover and
| formalize. I do not say that you are not right, your
| suggestion is plausible, we have to find out.
| throw38489595 wrote:
| Sadly long-covid research is very underfunded. Doing a few
| thousand DNA tests is not that expensive.
| garganzol wrote:
| Covid-19 is not a retrovirus. Otherwise, the people would
| not be able to reliably overcome it again and again. The
| same applies to post-covid - once you tame it by finding
| methods of correcting it, it goes away. I agree with you
| on necessity of further researches, but they require not
| only money, but also plenty of time, decades perhaps.
| throw38489595 wrote:
| > reliably overcome it again and again
|
| I would disagree with that. We are only a few years in,
| many people did not recover yet. And taking severe
| medication is not exactly "correction".
|
| There is a research that suggest some unusual COVID-19
| variants are able to penetrate cell nucleus. That is why
| we need DNA sequencing studies! And not just on patients,
| but their microbiome as well!
|
| And I do not think it will take decades, but couple of
| years maybe months!
| treyd wrote:
| Coronaviruses are RNA based and do not carry the reverse-
| transcriptase proteins (as retroviruses like HIV do) which
| would be necessary to embed genetic material in host cells'
| DNA. They directly cause production of the proteins to copy
| their RNA into new virus capsids.
| throw38489595 wrote:
| Perhaps it is a new variant.
| kolinko wrote:
| Proteins like reverse-transcriptase are quite complex,
| it's not a mutation that would appear so suddenly. Also,
| having such a protein would significantly change how the
| virus operates, and it would be visible upon sequencing
| it.
| Wobbles42 wrote:
| I am _way_ outside my area of expertise and speculating
| wildly here, but aren 't various retroviruses quite
| common in our environment? Enough so that many COVID-19
| infections must have occurred simultaneously with one of
| many such viruses?
|
| So, logically, COVID-19 viral components likely have
| coexisted inside our bodies with some quantity of reverse
| transcriptase, no?
|
| I do know that we find viral DNA in human DNA, likely as
| a result of past retroviral activity. I wonder if we ever
| find sequences from non-retroviruses that have hitched a
| ride so to speak.
| treyd wrote:
| Virus genes aren't like lego pieces that just snap
| together and work. Genetics is a very delicate balance.
| Retroviral RNA evolved to be packaged up in such a way
| that it's ready to be transcribed by the reverse
| transcriptase. Coronaviruses didn't do this.
|
| If this was actually what was happening then we'd expect
| to either see:
|
| * (if it utilizes a present retroviral reverse
| transcriptase) only people with active retrovirus
| infections getting long COVID
|
| * (if a variant picked up the gene from another
| retrovirus) evidence for reverse transcriptase being
| copied into a widely circulating variant that for some
| reason is only activated in some people
|
| We don't see either of these things happening. It would
| be _extremely obvious_ from the data and genetic samples
| that that happened. There 's also generally very little
| evidence for viruses picking up features across long
| genetic distances. If this was common we'd see more of
| it.
|
| SARS-CoV-2 also generally infects _different_ types of
| cells than the ones that HIV does, so even if that was a
| possibility genetically, it 's unlikely because they're
| not active in the same cells.
| nradov wrote:
| There has been no such collective conclusion. It could be
| correct and there are several viable hypotheses in there worthy
| of further research but nothing that meets the standards of
| evidence-based medicine.
| garganzol wrote:
| Survival comes first, while evidence-based, official, one-
| size-fits-all approvals do not come into existence until a
| large enough statistical samples are collected. Chicken and
| egg dilemma of its own.
|
| P.S. People are preparing for WW III with a far greater
| enthusiasm now, imho. Which is sad.
| Winsaucerer wrote:
| This might be an ignorant question, but are these therapies
| likely to help chronic fatigue that predates Covid-19?
| 20k wrote:
| Long covid, and CFS, are almost certainly the same disease.
| The person you're replying to is massively overselling the
| efficacy of treatment though, most people with this kind of
| fatigue tend to improve to a lower level of functioning than
| before their fatigue. Nobody has much idea of what the
| underlying disease is, and there's no evidence that you can
| cure it with any treatment
| garganzol wrote:
| If you talk about ME/CFS, then it is known to be helpful in
| some specific cases, but not universally. People with ME/CFS
| tend to be driven by autoimmunity as a primal factor of the
| disease.
|
| There is a clear problem of diagnosis and intersection of the
| symptoms. What we call ME/CFS today may be several distinct
| diseases with overlapping symptoms.
|
| To give you a direct answer: it helps with chronic fatigue,
| but only if one of the causes of the illness has a metabolic
| impairment component in it. Otherwise, no improvements are
| observed.
| ActionHank wrote:
| Not a doctor.
|
| I've struggled with fatigue, memory issues, and brain fog since
| having covid.
|
| Biggest game changer for me has been supplementing NMN in the
| morning, NAD in the morning and afternoon. Both work to support
| ATP levels.
|
| With this I've been able to get back to gym in the morning and
| still work through the day with no sleepiness.
| y-c-o-m-b wrote:
| I've read that certain people can't convert NMN to NAD very
| well and the accumulation of NMN can actually result in
| serious neurological issues. Seems to be working fine for
| you, but I would caution people here to do their research
| before using _any_ supplements. Some of them can be very
| harmful, especially in early stages where they haven 't been
| properly studied.
| ActionHank wrote:
| Thanks, I didn't realize this was possible. Will take a
| look into it.
| laweijfmvo wrote:
| I'm going to ask, not because I have an agenda but because I'm
| genuinely ignorant but curious: I see a lot of people
| mentioning things like mitochondria and spike proteins; can any
| of this be caused by the virus OR the vaccine? or just the
| whole virus? Thanks!
| garganzol wrote:
| Any virus and any vaccine can extremely rarely cause a post-
| viral malaise with similar symptoms. But Covid-19 (as a
| virus) stands out in terms of frequency of these occurrences
| moving the needle from "extremely rarely (~never)" to
| "occasionally (~it happens with my friends and family)".
|
| In terms of outcomes and probabilities, having a vaccine is
| 10000x better than facing a virus directly. Note that in some
| rare cases, the burden of certain chronical health conditions
| may overweight the benefits of a vaccine, so it is always
| better to consult to a doctor who knows you well.
|
| Personal anecdotes: I do not know anyone who developed a
| post-covid condition after being vaccinated, but I know
| plenty of people who developed a post-covid after covid. I
| knew people who died from covid not being vaccinated.
| fragmede wrote:
| There is a tiny handful of people that developed adverse
| reactions to just the vaccine and it's dishonest to pretend
| those cases didn't happen just because dumbfucks are going
| to hear that story and use that as an excuse to not get the
| vaccine
| margalabargala wrote:
| The question here is specifically about chronic, long-
| term, Long-Covid-like adverse reactions.
|
| The vaccine certainly has occasionally caused immediate,
| acute issues with people, which is why you aren't
| supposed to leave the administration site for 15 minutes
| after you get it.
|
| But there are not chronic adverse reactions to the
| vaccines.
| fragmede wrote:
| there have been. we _really_ don 't talk about those.
| margalabargala wrote:
| Source: "It's a secret, trust me bro"
| margalabargala wrote:
| Just the whole virus.
|
| Let's imagine for a moment that the antigen produced by the
| vaccine was the exact one that _does_ cause all of these
| symptoms. Even in this hypothetical world, only the whole
| virus can cause long term symptoms, because only it can
| replicate itself and persist.
|
| The vaccine expresses itself once, and is gone. All that's
| left after a few days is the immune system's memory, no
| different than any other antigen.
|
| There is no mechanism for the body to chronically begin to
| create vaccine spike proteins after receiving the vaccine.
|
| There is however a mechanism for the body to attribute any
| random real or imagined symptom to something they heard about
| and think sounds right.
| SigmundA wrote:
| The mRNA vaccine tells your cells to create the spike protein
| that was isolated from the original virus for about 48 hours
| at levels much lower than the virus itself. mRNA is used up
| by this process which is why your cells stop producing the
| spike protein and go back to their previous functions. Your
| immune system then attacks the spike protein and is better
| adapted to do this next time giving you better protection.
|
| The virus takes over your cells completely turning them into
| covid virus factories destroying them in the process the new
| viruses then continues until your immune system can stop
| this. During this time the amount of spike protein from the
| viruses are much higher by order of magnitude than with the
| mRNA vaccine along with the damage cause by the virus
| replicating itself.
|
| The spike protein is thought to have some adverse effects
| around heart issues, it is not well understood. However the
| risk is thought to be much higher from the virus than the
| vaccine due to shear volume of spike protein and the data
| seems to confirm this.
| dennis_jeeves2 wrote:
| > I see a lot of people mentioning things like mitochondria
| and spike proteins; can any of this be caused by the virus OR
| the vaccine?
|
| Ask the people who never had the vaccine. There are not many
| in that category though.
| bebeukrmf wrote:
| With vaccine it depends on type and batch. It took some time
| to refine manufacturing process, quality varies a bit, and
| some batches were pulled out.
|
| If you have a concern, I would suggest get your batch
| numbers, and ask at relevant forums. There are databases.
| tootie wrote:
| I've read about long COVID and the hallmarks but it seems like
| Dianna is experiencing something far worse than average.
| Chronic fatigue is one thing but unable to stand for two years
| is horrendous. Are there any other recorded cases this severe?
| garganzol wrote:
| I am not aware about anyone being hit harder than Dianna by
| post-covid. Her case is extreme.
|
| While she is gaining her power back, there is still a
| considerable probability of acquiring dementia for her, she
| is in the grey zone now.
|
| And note, we read only what meets the eye. Below that line,
| there were extreme panic attacks (crashes) with a sense of
| imminent death. I think that in many cases, the death by
| itself is more peaceful than 100x repetitions of the
| associated experiences.
|
| Panic attacks are usually treated as a psychological
| phenomenon, but in case of post-covid they have metabolic
| nature. Tiny parts of body tissues literally die out of
| energy starvation. It applies to energy-hungry organs first,
| brain, nervous system, heart, liver, muscles. The heavy cases
| of post covid is like being a zombie who is still alive, but
| with tissue hypoxia and consequential tiny necrotic spots
| hidden inside under a healthy rosy skin.
| badc0ffee wrote:
| Is any of that last paragraph actually real? Are these tiny
| dead parts of the body so tiny that we can't actually
| observe them or something?
| Wobbles42 wrote:
| To further this, is "long COVID" actually something we can
| definitively diagnose? Clearly something is going on with
| Dianna, but if the symptoms or severity don't match other
| long COVID cases perhaps there is something else going on
| there.
| garganzol wrote:
| Usual blood work panel tends to be excellent for post covid
| suffers. So no widely available diagnostic abilities so
| far, except looking for hallmark symptoms and trying to get
| slightest hints from the blood work variations.
|
| Potentially, for mild and heavy forms of post-covid,
| measuring blood lactate and bicarbonate levels may be
| helpful [0]. But nobody seems to care enough to follow up
| with organized evaluations to introduce it into general
| practice.
|
| [0] https://pmc.ncbi.nlm.nih.gov/articles/PMC10140510/
| pkaye wrote:
| > ...the condition is caused by some kind of metabolic
| impairment that presumably affects the ability of mitochondria
| to produce the adequate levels of ATP. As a direct consequence
| of that insufficiency, the immune system gets activated and
| starts to attack body's own tissues.
|
| Why would the metabolic impairment cause the immune system to
| get activated? Also do tests show which immune cells get
| activated? Are there existing medications that can moderate
| those immune cells that might work?
| nelblu wrote:
| Big fan here, just came to say Happy Physicsing :) and get well
| soon Diana :). Also happy to see her being discussed on HN.
| ginkgotree wrote:
| I've been following her and rooting for her along with thousands
| of others, and reading this just now made me smile and tear up a
| little. I'm so happy for her!
| cpncrunch wrote:
| Here is a site with a lot of long covid recovery stories:
|
| https://www.longcovidcured.com/
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