[HN Gopher] Multiple Sclerosis Causality
___________________________________________________________________
Multiple Sclerosis Causality
Author : nabla9
Score : 617 points
Date : 2022-01-14 17:31 UTC (1 days ago)
(HTM) web link (www.science.org)
(TXT) w3m dump (www.science.org)
| mirekrusin wrote:
| Is anybody testing for virus/bacteria vs virus/bacteria
| interactions?
| sonicggg wrote:
| Cause is still not well explained. EBV is such an ubiquitous
| virus, more than 90% of all adults worldwide have been infected
| with it. Most will never know. Why is that just a tiny percentage
| develop MS?
| rewgs wrote:
| Welcome to the immune system :p
|
| Most people don't develop food allergies. Especially most
| adults if they don't have a family history of it/didn't have
| any food allergies as children. Those that do typically only
| develop 1 or 2.
|
| I can't imagine how infinitesimally small the odds of this
| happening to me are, and yet here I am, at age 31, with nearly
| 30 food allergies that all activated about a year ago,
| seemingly overnight. No known cause, and after a year of
| researching the immune system and just how depressingly little
| medical science knows about it, I doubt I'll ever know, let
| alone receive a treatment that will allow me to eat like a
| normal person again.
|
| And that's just one way in which the immune system can go
| haywire. There's MS and all the dozens of other (auto)immune
| issues -- so many that some don't even have a name. It is truly
| baffling, but the immune system has gotta be one of the single
| most complex systems known to man. There's a whole lot of ways
| something like that can break.
| dd36 wrote:
| Pardon my ignorance, does this mean you won't have allergies
| if you take an immunosuppressive drug?
| killjoywashere wrote:
| EBV is associated with a lot of things that involve a tiny
| percentage of the population. Nasopharyngeal carcinoma,
| Hodgkin's lymphoma. Non-Hodgkin's lymphomas. Post-transplant
| lymphoproliferative disease. Burkitt's lymphoma. Oral hairy
| leukoplakia. Related viruses are associated with other
| diseases, e.g. HHV-8 and Kaposi's Sarcoma, primary effusion
| lymphoma, and Castleman's disease.
| jessriedel wrote:
| Is there an estimate anywhere of the total health burden of
| EBV, making reasonable assumptions about causality for the
| diseases you describe? Would be very interesting to know so
| you could compare it to the risk of a future EBV vaccine.
| throwawaylinux wrote:
| What are the reasonable assumptions about causality?
| Metacelsus wrote:
| I calculated it on my blog a few months ago: Every year, it
| causes the loss of 4.6 million disability-adjusted life
| years due to cancers alone, and another ~2 million to
| autoimmune diseases like multiple sclerosis.
|
| https://denovo.substack.com/p/epstein-barr-virus-more-
| maladi...
| scotty79 wrote:
| Why only a small percentage of those who contracted polio got
| paralysis? Interesting, but for now let's settle on eradicating
| ebv to hell
| malloc2048 wrote:
| Good question, if I am correct there is also a higher chance to
| develop MS if you are a woman and if you live in the northern
| hemisphere and some parts of Australia and New Zealand.
|
| Also if you are of Northern European descent the risk is higher
| if I remember correctly.
|
| Possibly it's a mix of many things and you have to be one of
| the unlucky people where that mix triggers something in the
| immune system and the disease develops.
|
| I am very unlucky in that regard.
|
| According to my doctors the number of autoimmune diseases I
| have is rare in a single person.
|
| I have a sysmetic autoimmune disease (Rheumatoid Artritis) and
| autoimmune diseases in my kidneys, liver,thyroid, skin and
| mouth.
|
| So somehow multipe times there were events in my life where a
| mix of things caused my immune system to turn against me.
|
| A little off-topic, but to give an impression of how that works
| out in daily life, in case you are also diagnosed with an
| autoimmune disease.
|
| If you are lucky, there is good medication and you will hardly
| notice you're ill, except for the checkups with your doctor
|
| I also know some autoimmune diseases can (become) pretty
| aggressive, but n=1, most people I know with autoimmune
| diseases have a decent quality of life.
|
| Fortunately, in my case also for each disease there is
| medication that either supresses the inflammation or the
| protects my body against the effects of the auto-immune
| response.
|
| So I take my pills and a bi-weekly injection with a biological
| and I can continue to live with a decent quality of life.
|
| Except for one important thing, my main remaining symptom is
| that I have a lot less energy than most people and need much
| more sleep.
|
| Despite that all inflammation parameters in my blood show no
| signs of inflammation or activity of the disease, my body
| somehow loses energy to something.
|
| This seems to be a complaint of many autoimmune illness
| sufferers, no signs of activity of the ilness, but more tired
| than before the disease came into their life.
|
| Hopefully there will soon be more developments in this area of
| medicine.
| someotherperson wrote:
| > if I am correct there is also a higher chance to develop MS
| if you are a woman and if you live in the northern hemisphere
| and some parts of Australia and New Zealand. Also if you are
| of Northern European descent the risk is higher if I remember
| correctly.
|
| I believe this has been largely disregarded. The higher
| incidence rate in Europe/Anglosphere was a consequence of
| higher testing and accurate diagnoses, coupled with the
| ability to provide treatment.
| supperburg wrote:
| Yes, inflammatory signals can and do pull metabolic levers,
| something that is criminally under appreciated, and this can
| manifest as feeling tired somehow. There is absolutely a
| connection.
| jessriedel wrote:
| This question, though very worthwhile, doesn't necessarily need
| to be answered. Vaccines for EBV are under development. If we
| stop most EBV infections, we can stop most MS.
| lamontcg wrote:
| Doesn't help you if you've already got a persistent EBV
| infection though, and the host immune response to EBV may be
| something that you want to avoid stimulating if you've
| already got it in you and can't get it out.
|
| Something like CRISPR/Cas9 editing may be the way to treat
| persistent EBV and other herpesvirus infections.
| bluGill wrote:
| Maybe, though it appears that covid vaccines help clear
| long covid, so maybe not. Until we have a vaccine we cannot
| study this to see how or if it works.
| lamontcg wrote:
| Persistent EBV and long COVID are very unlikely to share
| any mechanisms, those are apples and oranges.
|
| With little protein expression, training T-cells to
| identify viral MHC-epitopes is unlikely to ever clear
| something like EBV. There's no proteins, there's no
| virions, there's no proteases, the better target is the
| genome itself:
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4445958/
| scotty79 wrote:
| New vaccine to ebv targets also the proteins exposed
| during latent phase.
| sonicggg wrote:
| Vaccine is no guarantee though, just look at Covid. DW was
| recently covering breakthrough cases that led to Long Covid.
| You're speculating now.
| boondaburrah wrote:
| Right but when was the last time anyone you know got polio?
| Vaccines aren't 100% effective but if we can get the
| average susceptibility to the virus in the population down
| far enough (even though it'll never be complete) there's a
| threshold where the virus can have a hard enough time
| hopping that it really makes a difference.
| bagacrap wrote:
| I don't see where gp assumed a vaccine will be effective.
| Note "if".
| Metacelsus wrote:
| Yeah, but will the vaccines be effective? EBV is amazingly
| good at immune evasion. Prior antibodies don't protect
| against re-infection.
| Miner49er wrote:
| From my understanding, the leading theory of what causes
| autoimmune diseases is viruses. The immune system responds to the
| virus and ends up mistakenly attacking the body as well. This
| seems to support that, and shows that different viruses cause
| different autoimmune diseases.
|
| More info: https://www.nature.com/articles/d41586-021-01835-w
| jjcon wrote:
| Any thoughts as to why autoimmune diseases are (or at least
| seem) more prevelent in the 1st world?
| epgui wrote:
| Broadly speaking, the hygiene hypothesis is the current
| leading explanation.
|
| To make an analogy, in AI/ML terms, it amounts to a training
| set problem: you're not exposed to a diverse enough set of
| microbes and pathogens, or you're exposed to a biased sample,
| or you're not exposed to enough microbes.
|
| Your immune system's role is to act as a classifier to
| discriminate between good and bad, self and non-self. When
| you have a bad training set, you increase the odds that good
| things will be identified as bad, or that self antigen will
| be recognized as foreign.
| Broken_Hippo wrote:
| If your country doesn't have a medical system that will
| detect such things in the general population and does not
| have a system to get the numbers for statistics, how are you
| going to know how prevalent something is?
|
| We don't know how common lots of things are in 1st world
| countries either, simply because we don't track.
| dham wrote:
| Parasites. When you start getting rid of parasites in 3rd
| world communities, auto immune issues start to crop up. It's
| thought that since the body isn't fighting off parasites then
| it sits idle and starts attacking itself. It kind of makes
| sense from a purely evolutionary perspective. There's
| actually been treatments for some auto immune diseases that
| involve giving a relatively harmless parasite to people.
| f6v wrote:
| They're just probably under-diagnosed in the 3rd world.
| colechristensen wrote:
| Four candidates: hygiene, better diagnostics, different
| exposures, longer safer lives.
| atombender wrote:
| There's also some really compelling evidence that psoriasis is
| caused by _bacteria_. Psoriasis is often described as
| autoimmune, but is probably better described as _immune-
| mediated_ disorder. Unlike autoimmune disorders like MS and
| lupus, psoriasis doesn 't involve the body "attacking" itself.
|
| Specifically, streptococcus bacteria such as _Streptoccocus
| pyogenes_ , also called Group A Streptococcus, which is
| primarily responsible for rheumatic fever and scarlet fever in
| developing countries, and more commonly known in the West for
| causing strep throat (streptococcal pharyngitis).
|
| We already know with almost certainty that _S. pyogenes_
| triggers a form of psoriasis called guttate, which in 60% of
| cases resolves on its own within 1-3 months. But in the
| remaining cases, it turns chronic. It can also come and go:
| spontaneously resolving and then coming back a few months
| after.
|
| What's particular about strep is that it appears that it can
| lie dormant in the body. The tonsils of psoriasis sufferers
| have been found to contain strep bacteria, and a recent meta-
| study concluded that a tonsillectomy can significantly improve
| psoriasis in about 70% of patients who undergo the procedure;
| so it's likely that the tonsils act as a reservoir for
| continuous reactivation. (Apparently, people who have a
| tonsillectomy as a child are also less likely to develop
| psoriasis.) Strep bacteria are also thought to evade
| serological detection by hiding in biofilm, from which they
| periodically emerge to reactivate the immune response.
|
| As to why only some people develop psoriasis, the explanation
| might be some kind of genetic predisposition. Psoriasis is
| often explained as maybe being caused by "cross talk" between
| the adaptive and innate immune systems.
|
| Some papers:
|
| Streptococcus pyogenes-induced cutaneous lymphocyte antigen-
| positive T cell-dependent epidermal cell activation triggers
| TH17 responses in patients with guttate psoriasis
| https://pubmed.ncbi.nlm.nih.gov/27056267/
|
| Group A streptococcal pharyngitis: Immune responses involved in
| bacterial clearance and GAS-associated immunopathologies
| https://pubmed.ncbi.nlm.nih.gov/28951419/
|
| Psoriasis, chronic tonsillitis, and biofilms: Tonsillar
| pathologic findings supporting a microbial hypothesis
| https://pubmed.ncbi.nlm.nih.gov/29554401/
|
| Psoriasis, chronic tonsillitis, and biofilms: Tonsillar
| pathologic findings supporting a microbial hypothesis
| https://pubmed.ncbi.nlm.nih.gov/29554401/
|
| Tonsillectomy and the subsequent risk of psoriasis: A
| nationwide population-based cohort study
| https://pubmed.ncbi.nlm.nih.gov/33548305/
|
| Mechanisms of microbial pathogenesis and the role of the skin
| microbiome in psoriasis: A review
| https://pubmed.ncbi.nlm.nih.gov/30981296/
| f6v wrote:
| I've been reading recent research on MS and other autoimmune
| conditions. I also study APS1 in my PhD at the moment (caused
| by AIRE gene deficiency). I'm definitely not an expert, but I
| don't think it's a leading theory. As always in biology,
| autoimmune diseases probably have dozens different causes. Many
| of them might be environmental or genetic. Better yet a
| combination of the two.
| deltaonefour wrote:
| If MS is a faulty immune response from EBV, wouldn't a vaccine
| theoretically and potentially trigger this same faulty immune
| response?
|
| There are obviously other causative factors influencing MS. One
| is EBV, the other is likely a specific type of immune system.
| croes wrote:
| EBV stays in the human body, a vaccine wouldn't.
| Metacelsus wrote:
| Some vaccines (like VZV vaccine) persist in the body.
| panabee wrote:
| are you on twitter?
|
| your blog is highly educational. i'm interested in learning
| more about EBV and other viruses.
|
| for instance, given that VZV is common but not every
| infection causes shingles, how does VZV pass koch's
| postulates to establish causality?
|
| similar question applies to SARS-CoV-2 and CRS.
| deltaonefour wrote:
| The immune system upon reacting to EBV or a vaccine should
| theoretically eliminate EBV on contact so it won't stay in
| your body?
|
| Are you implying that that a vaccine cannot eliminate EBV?
|
| Additionally, a faulty immune response also means your immune
| system can't differentiate between EBV and your nerve cells.
| So theoretically speaking even if there's no EBV in your body
| having MS means that your body thinks EBV is in your body
| even if it's not. A vaccine in my mind could still induce
| this reaction.
| croes wrote:
| I meant that it's unlikely that a EBV vaccine triggers the
| same response as EBV because EBV stays and the vaccine
| wouldn't.
|
| Same with the Corona vaccines unlike this implies
| https://news.ycombinator.com/item?id=29942670
| vintermann wrote:
| Climate is also a known factor. MS is more prevalent in
| temperate climates. A study from some years back suggested that
| if you move before the age of 15 or so, you get the risk of
| your new climate instead.
| epgui wrote:
| Short answer is no.
|
| Long answer is that the question is premature (we need to
| answer more mechanistic questions first, and then we need to
| have an actual potential vaccine strategy to talk about) and
| there is currently no particular reason to suspect this.
| adnmcq999 wrote:
| That's why I won't MRNA
| kisamoto wrote:
| I will read this but as someone who has had a family member
| diagnosed with MS if there are other connections or papers people
| can recommend I would be very grateful.
| steelframe wrote:
| This might explain why between 1992 and 2017 interferons were the
| go-to treatment for MS. Interferons (IFNs) are a group of
| signaling proteins made and released by host cells in response to
| the presence of several viruses. A virus-infected cell will
| release interferons causing nearby cells to heighten their anti-
| viral defenses.
|
| After my diagnosis I personally went on Avonex (an interferon) in
| 2000, which was the only disease-modifying treatment (DMT) for MS
| at the time. My neurologist told me that they had no idea why
| interferons worked for MS, but they proved to be relatively safe
| and effective as slowing both clinical and symptomatic
| progression of MS. Naturally I asked the question to all my
| doctors, "Can a virus in the CNS be involved in triggering
| T-cells to cross the blood-brain barrier?" They would usually
| respond, "That's as good an explanation as any."
|
| So I religiously stayed on interferons through to 2014, when the
| FDA approved an oral medication for MS. By that time I was really
| getting tired of the constant injections (I hate needles), and my
| MS had caused minimal problems for me up to that time, so I
| decided to give the non-interferon DMT it a try. The clinal trial
| data for this non-interferon medication looked promising. But in
| the year I was on the non-interferon DMT my MS progressed, and I
| didn't go back to interferons until after things culminated in a
| serious attack (relapse). I currently live with a lot of symptoms
| from new lesions that formed in my spinal cord in that year I was
| off interferons.
|
| This experience had an impact on how I approach problems in
| general. These days I'm a lot more likely to stick with
| technology that is tried and true for any particular problem,
| even if that older technology is a little painful to set up and
| use. If it's been working fine up until now, don't rock the boat
| just because another option has come along.
|
| Of course this doesn't mean I'm inclined to always only ever use
| old technology. If something very clearly superior comes along
| that has overhelming evidence of effectiveness, I'm open to
| changing. In 2017 I made the switch to Ocrelizumab, which is a
| monoclonal antibody that knocks down your B cells. The data from
| that was so compelling that I realized that was the right thing
| to move to from interferons. In hindsight, that has been a much
| better move than my disastrous experiment with the oral meds.
|
| This recent study relating to EBV confirms my personal suspicions
| about the role of a virus in the development and progression of
| MS. Hopefully what this means is that therapies will come along
| that specifically target proteins only in EBV so that I can get
| my B cells back, since one of the consequences that a medical
| study I was in last year revealed is that my body doesn't produce
| antibodies in response to the COVID vaccine. I'd really like to
| get antibodies again, since I imagine that could give me more
| protection than what I get from the other immune cells I have.
| gregwebs wrote:
| Dr. Terry Walhs was diagnosed with MS and became wheel chair
| bound. She came up with a protocol that was able to reverse her
| MS. I recall from previous interviews that her theory was that MS
| was a disease of the mitochondria. https://terrywahls.com/
| _qua wrote:
| And what's the theory for why supposedly successful treatment
| is not embraced by the medical community? Is it not more likely
| that her diagnosis was incorrect, or her course was atypical
| than that she independently discovered a cure which is rejected
| by the medical community at large?
| Broken_Hippo wrote:
| In many circles, the Wahl's protocol (basically diet) is
| considered a scam. Diet does not cure MS. Governments and
| health insurances surely would rather pay for food every
| month than pay the costs of current medications.
|
| On the other hand, medications have greatly improved quality
| of life for MS patients over the last 20 years or so. Folks
| diagnosed today aren't in the same dire boat as someone 30
| years ago.
| gregwebs wrote:
| As a counterpoint example someone close to me was diagnosed
| with irritable bowel syndrome and told by doctors that
| there was no treatment and that diet did not help. When she
| adopted a paleo like diet with no other changes the IBD
| symptoms went away permanently almost immediately. Another
| counterpoint is that I was told by doctors when I was
| younger that diet was not a treatment for acne. This advice
| being based entirely on a single study with a single
| dietary intervention.
|
| I think you have a mistaken understanding of what it takes
| to change one's diet. A government handout wouldn't help in
| the slightest. It also doesn't help for a doctor to give
| someone a list of foods to eat or not eat.
| Broken_Hippo wrote:
| Diet is not a cure for MS. Period.
|
| A single diet might not be a cure for IBS, but IBS
| affects a digestive organ. Obviously, what you eat is
| going to affect a digestive organ, regardless of disease,
| and it seems obvious that a few folks have trigger foods.
|
| And honestly, if diet were an easy way to cure acne, it'd
| be prescribed more. Just because you got one thing as a
| youth doesn't make the opposite true.
| gregwebs wrote:
| I don't think our medical system has any mechanism to achieve
| high compliance for major dietary changes, so it's very
| difficult to study. Drugs are very easy to study.
|
| It's still an N of 1 case report from a medical evidence
| point of view so not likely to be widely applicable.
| Broken_Hippo wrote:
| the Walhs protocol is generally recognized as a scam. Diet does
| not cure MS. If it did, diet would be first line treatment as
| it would be _much_ cheaper to simply pay for someone 's food
| than the most effective MS treatments we have. Those treatments
| are solely responsible for the increase in an MS patient's
| quality of life (over time) because they actually prevent some
| damage. Some, not all - they are not a cure.
|
| And FWIW: It isn't uncommon for someone with MS to use a
| wheelchair temporarily. OR a cane. I was half blind for 6
| weeks, but that went away years ago. I spent time with numb
| hands, which has mostly (but not totally) gone away. If my legs
| had been affected - you guessed it, I might have used a
| wheelchair for a bit. All of this means that it can seem like a
| "cure" works when it is really just the way the disease course
| goes for lots of folks.
| gregwebs wrote:
| It doesn't seem like you have spent any time understanding Dr
| Wahls information. It took her six years to be able to ride a
| bicycle.
|
| I don't know anyone with MS whose disease course went to
| effectively cured years, but I admit to being ignorant on the
| subject.
| Broken_Hippo wrote:
| I don't need to do that personally. If the professionals
| can't replicate results, then it is a sham [1]. They are
| selling snake oil and books full of promise they can't back
| up. She doesn't tend to mention that she had chemo, which
| you probably understand wipes out the immune system. It
| isn't uncommon to have little disease activity after that.
| You probably also don't realize that she didn't use a
| wheelchair because she _couldn 't_ walk, but because of
| fatigue. Fatigue and balance issues are really common in
| MS: It'd easily keep you off of a bicycle. There are
| medicines that help fatigue and sometimes this does ease
| even if you've had MS for years. There is also a good deal
| of overlap with depression/mood disorders and MS - which
| you might understand can come with their own fatigue.
|
| And when I speak of fatigue, I'm speaking of "Oops, I
| showered today and I can't do anything else" sort of
| disabling fatigue.
|
| Diet is not a cure for MS, and we should really quit
| pushing sham cures from folks preying on other people's
| feelings of hopelessness. Which, as you can imagine, is
| pretty common with MS. The most horrifying part of this is
| that it keeps folks from trying things that actually are
| proven to improve quality of life in the long run:
| MEdications. Medications actually prevent relapses. Diet
| does not.
|
| At most, diet is important in the same way it is important
| for everyone else: Most folks have slightly better outcomes
| if they, in general, eat healthy and are active. This isn't
| special to MS nor do you need to follow some strict diet.
|
| [1] https://en.wikipedia.org/wiki/Terry_Wahls
| gregwebs wrote:
| Your citation doesn't backup your name calling: there is
| no information about failed attempts at replicating her
| results. There is an on-going study with 100 participants
| on the Wahls protocol. [1]
|
| If I had taken your point of view, I wouldn't have cured
| my psoriasis. I wouldn't have witnessed someone curing
| their irritable bowel syndrome. I would have kept taking
| antibiotics instead of addressing acne with other
| techniques. In all cases, these were "sham" cures not
| proven by science according to your POV. In all cases
| these are now slowly being recognized as valid approaches
| for treating the disease.
|
| By your reasoning every medical treatment that is
| accepted today would have to have previously been a
| "sham" before it was accepted.
|
| What worked for Dr. Wahls might not work for others as
| well as it did for herself, but it did work for her. Name
| calling doesn't un-publish her case report [2] or halt
| the ongoing study of her protocol [1].
|
| [1] https://clinicaltrials.gov/ct2/show/NCT02914964
|
| [2] https://terrywahls.com/wp-
| content/uploads/2014/01/Case-Repor...
| _qua wrote:
| Doctors who feel they discovered a radical treatment but
| can't convince their colleagues and then create a sales
| website with training courses and products are highly
| correlated with quackery.
| scotty79 wrote:
| I wonder how many viruses infecting humans we know nothing about
| just because they don't cause any obvious symptoms.
| NerdyNumbersGuy wrote:
| This featured quite heavily in todays issue of The RECC'E I put
| out this morning! Worth a quick read if you like quick- fact
| insights https://email.recce.news/a7i9l9x8y1
| mactournier wrote:
| Contrary to the HN title, the paper is not about causal
| inference, it is a case-control study. A good primer on the
| limitations of case-control studies can be found here:
| https://www.medicalnewstoday.com/articles/280936#limitations
| letmevoteplease wrote:
| The abstract of the study states, "These findings cannot be
| explained by any known risk factor for MS and suggest EBV as
| the leading cause of MS."
| axlee wrote:
| Your contrarian approach is detrimental to proper research.
| Authors have found a very strong link that cannot be explained
| by any other risk factors. What risk factors are you suggesting
| they should look into?
| Metacelsus wrote:
| For more on EBV, I've discussed it on my blog here:
| https://denovo.substack.com/p/epstein-barr-virus-more-maladi...
|
| (It doesn't just cause MS!)
| brechmos wrote:
| What is interesting is that Epstein-Barr has been reported to be
| related to Multiple Sclerosis since the early 1980s.
|
| https://pubmed.ncbi.nlm.nih.gov/?term=epstein+barr+multiple+...
|
| It is great if there is new information and if this leads to
| knowledge on how to reduce the chance of getting MS.
| cheaprentalyeti wrote:
| I saw this news item last night, posted next to that one...
|
| "Study finds hydroxychloroquine delays disability for least
| treatable form of multiple sclerosis" [0]
|
| [0]: https://medicalxpress.com/news/2022-01-hydroxychloroquine-
| di...
| xadhominemx wrote:
| Probably not
| degosuke wrote:
| The link returns 404.
| pkaye wrote:
| The link was missing the final "l".
|
| https://medicalxpress.com/news/2022-01-hydroxychloroquine-
| di...
| cheaprentalyeti wrote:
| Ah, a typo, an 'l' was missing.
|
| https://medicalxpress.com/news/2022-01-hydroxychloroquine-
| di...
| [deleted]
| obert wrote:
| Glad that we might eventually get rid of diseases from starting,
| but when it comes to a cure, research is unbalanced towards
| treating instead, because it makes more money.
| clord wrote:
| I wonder if MS is like the EBV version of shingles: if you don't
| get it early, when you do, it's a much worse disease. Most people
| pick it up early, but those who manage to avoid it and then get
| it late are in danger. Another instance of hygiene hypothesis.
| [deleted]
| vintermann wrote:
| MS isn't, but yes, Epstein-Barr virus is more serious if you
| first catch it as an adult. That will likely knock you out with
| mononucleosis, a.k.a kissing sickness, for a few weeks. Fatigue
| can linger a lot longer.
| latortuga wrote:
| Definitely my experience. I had it as an adult at 26 and it
| absolutely knocked me out for weeks. I lost a ton of weight
| from having no appetite and having a constant sore throat.
| Sleeping was also terrible because I couldn't breathe easily.
| I think I missed 3 or 4 weeks of work and even when I started
| back I could only work half days for awhile at my not-
| strenuous desk job.
| deltaonefour wrote:
| This is a bit off topic but I have a question about causality.
|
| Is causality really a fuzzy concept? For example I assume if
| action A causes event B I assume the connection is 100%. Can we
| really say that action A has a 30% chance of causing event B?
|
| I ask because the more I think about it, when someone says action
| A causes a 30% chance of event B occurring what he is technically
| saying is action A is one causative factor that must occur and
| that we're missing information about other causative factors.
|
| In the case of this article. A causative link is established
| between EBV and MS to a fuzzy probable degree. This seems to me
| that technically what's actually occurring is that a fuzzy causal
| link simply means that there are other causative factors we don't
| yet know about, and likely this is a specific type of immune
| system that reacts to EBV in a certain way.
|
| Would my assessment be accurate? All causal connections are
| either 100% and any fuzziness just means we're missing
| information about other joint causal events that must occur to
| trigger the outcome. Does anyone who's a statistician know?
| csee wrote:
| This is more in the domain of philosophy than statistics.
|
| I wrote something in response, but then saw that the Wiki
| article on causality was far better than what I wrote, so have
| a look at that.
|
| https://en.wikipedia.org/wiki/Causality
|
| https://en.wikipedia.org/wiki/Necessity_and_sufficiency
| dataflow wrote:
| > Is causality really a fuzzy concept? For example I assume if
| action A causes event B I assume the connection is 100%. Can we
| really say that action A has a 30% chance of causing event B?
|
| The world is probabilistic at the quantum level so I don't see
| how it could be otherwise.
|
| > I ask because the more I think about it, when someone says
| action A causes a 30% chance of event B occurring what he is
| technically saying is action A is one causative factor that
| must occur and that we're missing information about other
| causative factors.
|
| To my knowledge this has been physically disproven:
| https://en.wikipedia.org/wiki/Hidden-variable_theory#Bell's_...
|
| (Note I'm just responding to your philosophical question, not
| the biological one. In particular I'm not suggesting anything
| about the practical relevance of quantum effects to the biology
| discussion here, or lack thereof.)
| beaconstudios wrote:
| this doesn't occur above the quantum level though.
| echelon wrote:
| > we're missing information about other causative factors.
|
| Welcome to biology.
|
| Perhaps EBV is particularly immunogenic, but it has to
| reactivate in the presence of CD8+ T-cells or CD20+ B-cells
| along with some other self-signal or co-infection. Perhaps
| there's a chain of immune signaling that must happen upstream
| in other immune cell populations.
|
| Perhaps other agents can trigger autoimmune behavior in these
| cells, and EBV isn't strictly required. Maybe other viruses in
| the herpesvirus family (HSV, zoster, etc.) There could be more
| than one set of causes, and they might not even look similar.
|
| In the crazy absurd limit, maybe nothing at all. Maybe
| autoimmunity sporadically arises with no causal agent. Random
| radiation hits the cell at the wrong time.
|
| All or none of these could be the case. Diseases can have a
| multitude of causes, sometimes with complex interactions and
| interdependencies, sometimes not. With cancer it's a
| progression of increasingly worse state changes, and that could
| be the case here too.
| sva_ wrote:
| > All causal connections are either 100% and any fuzziness just
| means we're missing information about other joint causal events
| that must occur to trigger the outcome.
|
| I think one theory is, that the immune system has a way of
| approximating the surface of a protein, and in this way
| recognizes what to build antibodies against. This process could
| be a source of fuzziness as the "protein signatures" of a virus
| may vary from person to person. There is also the question how
| those signatures are stored and retrieved in the immune system,
| and why they -presumably- lead to the immune system
| misrecognizing myelin sheaths as a threat (in some people, some
| of the time.)
| gwern wrote:
| Is it helpful to ask about 'percentages' here? Is oxygen 0% or
| 100% of the cause of you posting here? What about gravity?
|
| Whenever you have a causal question, often taking a Pearlean
| perspective and asking about _interventions_ would be more
| useful. For example, there is an EBV vaccine being worked on
| right now. If you believe OP that EBV infection is a necessary
| but not sufficient condition for 90% of MS cases, then it would
| be reasonable to say something like "if we intervened by
| making everyone got the EBV vaccine, then there would be ~90%
| fewer MS cases than in the counterfactual universe where
| everything else was the same but no one got the EBV vaccine."
| That sounds much more interesting and meaningful to me than
| talking about how "EBV is necessary but not sufficient".
| peter303 wrote:
| There was a similar debate in the 1880s. Dr. Robert Koch
| claimed some diseases were caused by bacteria and developed a
| procedure to prove it. The germ theory of disease was
| controversial until then.
|
| Its suspected several diseases without known causes may be
| caused by a bacterium, virus or protein. But lack the evidence
| to satisfy the Koch postulates. These diseases include some
| cancers and many human nervous system diseases.
| beaconstudios wrote:
| simple, 1:1 causality (if I flick a light switch, the light
| turns off) is not fuzzy at all. Complex causality is more
| complex (obviously) and most things in real life have complex
| causality.
| Mezzie wrote:
| I have MS and my first relapse was a pretty textbook case of
| transverse myelitis of the sort that the EBV can cause.
|
| I know some people have been asking about why that might be the
| case when a ton of people have EBV, and I think the causality may
| go the other way: Those of us with something wrong are more
| likely to both have EBV complications _and_ MS.
|
| There are other viruses like this as well (ones that most people
| get/have but aren't dangerous). I was on one medication where I
| needed to be tested monthly because if I got one particular
| (normally harmless) virus, the suppression caused by the
| medication meant I would probably die.
|
| There's pretty clearly some sort of relation between the state of
| one's immune system + how it deals with 'benign' viruses + auto-
| immunity, and I'm excited to see what the future holds, but for
| now it's a cool confirmation of something a lot of MSers have
| talked about amongst ourselves for a while.
| jessriedel wrote:
| > I think the causality may go the other way: Those of us with
| something wrong are more likely to both have EBV complications
| and MS.
|
| I'm unsure, but it sounds like you're hypothesizing that EBV
| infections does not cause MS symptoms, and that instead some
| some third factor causes both, so that preventing EBV infection
| would not prevent MS. The paper being discussed specifically
| considers and rejects this possibility with pretty strong
| evidence. Indeed, that is the main contribution of the paper.
| (The fact that 99% of MS sufferers have EBV, way higher than
| the 90% baseline in the general population, has been known for
| a while.)
| csdvrx wrote:
| Or that people who can't clear EBV may be unable to due to
| some deficiency that also cause them to get MS
|
| Still a super interesting paper
| Mezzie wrote:
| That's why I shouldn't read articles instead of taking a nap.
| Thanks!
| loudtieblahblah wrote:
| There's other factors too.
|
| All MS suffer-ers have low VitD.(as does just about everyone
| with an autoimmune issue).
|
| They all have low uric acid too.
|
| Almost all MS sufferers (same more most autoimmune) can also
| trace their disorder back to an extreme stress event too -
| divorce, loss of a loved one, falling into health anxiety,
| etc..
|
| Are these causes or effects?
|
| I'm guessing there's compounding factors.
| roganartu wrote:
| > There are other viruses like this as well (ones that most
| people get/have but aren't dangerous). I was on one medication
| where I needed to be tested monthly because if I got one
| particular (normally harmless) virus, the suppression caused by
| the medication meant I would probably die.
|
| For those curious, I'm going to guess and say this might've
| been Tysabri (natalizumab) and that the virus in question is
| JCV (John Cunningham virus). After approximately two years on
| Tysabri, people who test positive for JCV antibodies (approx
| half the population of the US) have an extremely high chance of
| developing an often-fatal brain infection called PML
| (Progressive Multifocal Leukoencephalopathy).
|
| Tysabri was originally pulled by the FDA due to PML deaths back
| in the early 2000s, but later got reapproved after the link to
| JCV was discovered. Nowadays patients get tested for JCV
| antibodies every 6 months. The treatment is considered quite
| safe now, with the caveat that if you test positive you cannot
| get Tysabri anymore. Most people don't switch from negative to
| positive, but it happens occasionally.
|
| Source: my wife has a rare form of MS and has been on Tysabri
| for about 5 years now, relapse free. Modern MS drugs are a
| scientific marvel.
| loudtieblahblah wrote:
| Monthly 3-4 day fasts - combined with a healthy diet in
| between (Mediterranean for ex) do wonders for autoimmune
| issues as well.
|
| It was found fasting kills off old immune cells and activates
| stem cells to make new ones.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7474734/
|
| https://pubmed.ncbi.nlm.nih.gov/31442401/
|
| https://www.nejm.org/doi/10.1056/NEJMra1905136
|
| http://www.cell.com/cell-stem-
| cell/abstract/S1934-5909(14)00...
|
| In plain English
|
| https://www.forbes.com/sites/stevensalzberg/2014/12/30/can-a.
| ..
|
| https://www.medicalnewstoday.com/articles/277860#In-
| mice,-pr...
| 2dvisio wrote:
| Confirm. My brother is was on Tysabri for more than 5 and
| recently got confirmation of JCV. The checkup is however more
| regular. Blood test + MRI + symptoms check every three
| months, as if done less regularly would increase massively
| the risk. If JCV flare up is detected they'll need to
| flush/wash the Tysabri away from his bloodstream.
|
| He also got a severe mononucleosis infection before being
| diagnosed, and at that time we all thought that could have
| been the cause.
| Mezzie wrote:
| Bingo!
| supperburg wrote:
| Well said. I said the immune system should be to blame in the
| previous thread and was downvoted to hell. But it's true.
| What's more, it's highly under appreciated that the immune
| system is extremely ancient and it does a lot more than the
| typical things associated with it like destroying tissue. It
| pulls deep metabolic levers that can make critical cells,
| including brain cells, latent. It can do many amazing things.
| In the future, the immune system won't be known for immunity --
| it will be known as something like the second nervous system
| and will be associated with the nth great wave of medical
| progress when we finally conquer it and all the hundreds of
| diseases it causes. Diseases we don't even have a name for now,
| I know for a fact.
| the_decider wrote:
| An immunological biomarker aasociated with MS had been
| discovered a few years back, but sadly nothing came of that
| research. https://www.nature.com/articles/s41598-017-04439-5
| supperburg wrote:
| I think even if we find some markers it won't be enough. It
| will take a full blown revolution in how we measure human
| anatomy in a clinical setting. That's why it's taken so
| long.
| Broken_Hippo wrote:
| To be fair: I have MS. I've never had EBV with symptoms that I
| know of - which is absolutely normal. When folks catch it as
| children, there are generally zero to no symptoms. And I'm not
| alone, judging by activity on MS related sites.
|
| I wouldn't take the word of "a lot of MSers" - I mean, there
| are folks that push the scam WAHLS protocol (diet) as a cure,
| too. Unless the folks are researchers, an MSer's thoughts about
| what causes the disease are often just as baseless as a non-
| MSer.
| dtech wrote:
| > I think the causality may go the other way
|
| The whole point of the article is that this isn't the case.
| xdrone wrote:
| Here's a John McDougall talk, he had some close ties to Dr Swank,
| known for a lot of early MS research.
|
| https://www.youtube.com/watch?v=fmZdI8jinIw
|
| tldw: When your stomach layer is compromised, unprocessed food
| gets into your body. Food like animal protein, similar to our
| proteins, get attacked by the immune system, some of your cells
| are also mistakenly attacked.
|
| Anyone with the compromised stomach is at greater risk for auto
| immune diseases. For example look of rates of ms among celiac or
| crohn's sufferers.
|
| Same goes for type 1 diabetics, also autoimmune. Research
| suggests casein from dairy gets in the body, your immune system
| accidentally attacks your pancreas insulin making cells.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5518798/
| sumosudo wrote:
| All the health problems of modern society can be diminished
| greatly by ensuring the proper functioning of the gut.
| bagacrap wrote:
| please tell me how to ensure proper function of my gut
| howinteresting wrote:
| This study appears to suggest that MS is essentially "long
| Epstein-Barr." Terrifying if the same pattern holds for covid,
| given the number of people who have some sequelae (the most
| conservative estimates are 2-5% for "serious" post-viral
| symptoms, which would be hundreds of millions of people
| worldwide). There will be an extraordinary amount of suffering,
| not to mention radical shifts in economic and public policy.
| axg11 wrote:
| The study really doesn't suggest that. All it suggests is that
| EBV seropositive people are much more likely to develop MS than
| the seronegative minor population.
|
| As for long COVID, the data quality is very variable. I'd like
| to see a controlled study that compares recovery from COVID vs.
| other respiratory viruses.
| howinteresting wrote:
| It's pretty clear that the causal explanation is the only
| reasonable one here. (Besides, at least for covid, not
| everyone who contracts the virus develops antibodies for it:
| https://journals.asm.org/doi/10.1128/Spectrum.00904-21 )
|
| There's a reason I quoted conservative estimates of long
| covid. The 2% is from this ONS study: https://www.ons.gov.uk/
| peoplepopulationandcommunity/healthan.... The high end of
| estimates is 10-30%, which would mean the end of our current
| era of civilization.
| vintermann wrote:
| That sounds unlikely. Epstein-Barr is a herpesvirus, and it's
| persistent - once you catch it, it stays latent in your body
| and you'll shed it through your saliva periodically for life.
|
| As far as I can find, coronaviruses have no way to pull that
| trick. Once your immune system gets rid of it, it's gone and
| not coming back unless you're infected again by a sufficiently
| unrecognizable relative.
| Tagbert wrote:
| Like my uncle, Oscar? He looks nothing like anyone else in
| the family and looks out of place in family photos. I'm
| pretty sure he is antivax, too.
| kmeisthax wrote:
| There's another paper from June of last year[0] that proposed a
| long COVID explanation: Epstein-Barr reactivation. I haven't
| seen any follow-up work yet, but if both that and this paper
| have any predictive power to them[1] we might start seeing a
| cohort of "long long COVID[2]": people who got COVID, didn't
| recover, and then progressed to MS.
|
| [0] https://pubmed.ncbi.nlm.nih.gov/34204243/
|
| [1] I'm particularly worried about the "EBV reactivation"
| theory as COVID-related studies have been used as a vehicle for
| many medical frauds.
|
| [2] As per ISO standards long long COVID must have an infection
| duration represented with at least a 64-bit machine integer
| stefan_ wrote:
| There are lots of viruses that persist forever. You can get
| chickenpox as a kid then die of shingles as a retiree. Measles
| might give you only mild symptoms then 6-15 _years_ after
| reactivate and cause Subacute sclerosing panencephalitis
| (SSPE), a fatal brain inflammation with all the interesting
| symptoms that implies (starting out with mood swings
| progressing into dementia, muscle spasms and blindness).
|
| Think of this the next time some brain dead person starts
| talking about the "unknown long term effects of the vaccine" -
| we know what has long term effects, and it's freaking live
| viruses!
| f38zf5vdt wrote:
| Coronaviruses do a weird thing where their viral RNA persists
| in cells long after the initial infection. [1] No one knows if
| this has a bearing on long COVID or not.
|
| [1] https://www.nature.com/articles/s41592-021-01145-z
| jonnycomputer wrote:
| Yeah, I don't trust the viruses not to do sneaky shit. Not at
| all.
| vintermann wrote:
| It's not a terribly weird thing for a virus to do, but as far
| as I know (just an interested amateur) coronaviruses can't
| use this to stay latent.
| f38zf5vdt wrote:
| We don't really know. A recent manuscript submitted to
| Nature shows minute persistence in various tissues as long
| as 230 days or more post-infection. [1] RNA is fragile, if
| the infection is completely cleared or not integrated into
| the genome in some way we would not expect it to persist.
|
| [1] https://assets.researchsquare.com/files/rs-1139035/v1_c
| overe... (Figure 1)
| howinteresting wrote:
| I would be hesitant to generalize from existing
| coronaviruses to SARS-2. As the sibling comment points out,
| SARS-2 has been shown to persist in every organ of the body
| well after initial infection.
| dm319 wrote:
| Here's a link to the article [0].
|
| Just a bit of background - 95% of humans will experience
| infection with EBV at some point in their lives. Once you're
| infected, it remains latent, only flaring up in particular
| circumstances. MS is an autoimmune disease, like many others, and
| this paper does not imply that EBV directly causes MS. Obviously,
| as so many more people have EBV than have MS, EBV infection does
| not completely explain why people get MS.
|
| Just to put a small caveat to the paper. The comparison is to EBV
| 'seronegative' population - this is a minority of people (i.e.
| people who do not have evidence of being infected with EBV). You
| could argue this is an 'unusual' population in the first place
| and there's something about them that provides protection from
| MS.
|
| Another point is that EBV is a risk factor, there are other risk
| factors known too. I think the key to understanding a lot of
| autoimmune diseases is to understand how our adaptive immune
| system works. Our immune response is a very complex cell-to-cell
| interaction between millions of cells all with different roles,
| and how the immune system decides whether something is a threat
| or not is not, and how to respond to it, is not yet clear.
|
| [0] https://www.science.org/doi/10.1126/science.abj8222
| jonnycomputer wrote:
| I think this is may be one reason they used CMV infection as a
| control. Unless you think that the people who don't get CMV are
| not special, but the ones who don't get EBV are...
| dm319 wrote:
| Yes that's a good point.
| hda111 wrote:
| Had a similar thought when reading the headline. It's like
| saying drinking water causes MS.
| philshem wrote:
| 100.0% of people consume H2O. There is no control group.
| moneywoes wrote:
| As someone with an autoimmune disease, is there anything I can
| do to prevent getting more? Iirc having one is a risk factor
| for others
| kennethh wrote:
| I had Ulcerative colitis for 20 years and managed to get rid
| of it by changing the diet. I used the carnivore diet, ie eat
| mostly meat, egg, fish (animal products). Cutting out
| processed foods, sugar (only 70% dark chocolate) and seed
| oils. I would recommend trying it for a couple of months and
| see if it helps, and if you do not notice any difference you
| have not lost anything. I lost 10% of my body weight without
| ever being hungry so that might be a nice side effect also.
| dncornholio wrote:
| Carnivore diet seems like a perfect excuse for people who
| don't want to eat their veggies. If you could provide any
| proven benefits of this diet that other diets don't
| provide, I'll change my mind.
| Broken_Hippo wrote:
| To be absolutely fair to readers: Please speak to your
| doctor before deciding on a diet to "cure" an illness,
| especially since fatty foods can trigger attacks for some
| folks. Ulcerative colitis has no actual cure, and this is
| one way one person has managed it a bit better. It might
| not be recommended for you.
|
| (Sorry, i'm in this thread because I have MS, and there are
| lots of scam diets claiming to cure it. They don't - at
| all. They mostly just make folks feel like they have
| control).
| mb_72 wrote:
| Crohn's sufferer here. I have lost track of the times
| people have said "I tried this diet, and then my Crohns /
| UC went away".. and then some time later their symptoms
| reappeared. My understanding (via own reading and
| discussion with my doctor) is that there is just as much
| evidence against as for a meat-based diet .... or any kind
| of diet.
|
| As my specialist put it "if there was a common diet that
| cured people, we would know about it already". Anecdotally
| one never knows if their UC/Crohn's improves because of
| their diet or it's just part of the ups and downs of those
| diseases.
|
| That said, I'm happy in general if I hear a fellow UC /
| Crohn's sufferer seems to have found something that works
| for them, especially something that is better for you than
| steroids and other treatments with severe side-effects.
| jopsen wrote:
| Yeah, it's also my take that one should be careful
| correlating ups and downs to things eaten -- it might as
| well be stress or just bad luck.
|
| That said, if I can get some placebo effect benefits from
| believing that reducing processed food helps, it might be
| worth doing -- if nothing else it reduces cancer risks :)
| mpreda wrote:
| [this is not medical advice] Some things that may modulate
| the immune system are: vitamin D3, intestinal worms,
| exercise, diet / fasting, and gradual stimulation of the
| immune response ("desensitisation").
| trulyme wrote:
| Off-topic: interesting that we often see IANAL, but very
| rarely IANAD (I am not a doctor) around here. Either
| there's a lot of doctors here, or people are more
| comfortable giving medical than legal advice, which is
| weird, as medical advice can have very serious
| consequences.
| pbhjpbhj wrote:
| I think it's just default recognised that you're not
| getting a doctor's medical advice, particularly not for
| you, through an internet forum. So, someone would have to
| tell you they are a doctor, and you'd still not get their
| _medical_ advice unless you had a consultation with them.
| That last bit being similar to lawyers reminding people
| "IAAL but I'm not _your_ lawyer ".
| johnisgood wrote:
| Propolis and Cinnamomum verum are great immunomodulators
| for autoimmune diseases. Echinacea is sold as an immune
| system booster, and it is a firm nope.
| dm319 wrote:
| I'm afraid this is out of my scope of understanding. Once the
| immune system determines something is non-self, the immune
| system can often self-propagate the response. It eventually
| enters a tolerance phase where it aims to just 'control' the
| threat.
|
| There are some known modulators of the immune system, but the
| medical forms can be especially blunt tools (i.e. steroids).
| Locally directed treatment is better, and maybe in the future
| we'll have specially crafted cells that can inhibit a
| specific response for particular antigens.
|
| There is a long and slightly-controversial link between
| stress (and lots of other environmental factors) affecting
| the immune system. I'm not familiar with the literature.
| manwe150 wrote:
| I recently learned (also from HN) that wild-type measles
| can often destroy your bodies pre-existing immunities to
| most past threats. I wonder if we will someday be able to
| trigger a similar effect with a synthetic virus, wiping the
| immune memory, then re-vaccinate to get back immunity
| afterwards. But it is practically just science fiction
| stuff now, as far as I know.
| Broken_Hippo wrote:
| Nope. Since we aren't certain what _causes_ most things, we
| can 't really prevent them. (This research isn't saying they
| know what causes MS, to be clear).
|
| Realistically, the best thing you can do is basic health
| stuff. Get activity, eat a variety of healthy foods, and so
| on. As you can, anyway. Mostly because this stuff improves
| your outcome if you happen to get another (and probably helps
| with the one you have - I have MS, and this basic stuff tends
| to help outcomes)
| kortex wrote:
| Helminth therapy is supposed to help moderate it. I did it to
| get a handle on my asthma and allergies and it worked quite
| well. There's various websites and support groups which
| detail the process and why it works etc.
|
| There's a bit of squick factor to get over but it is worth it
| for the relief.
|
| https://helminthictherapywiki.org/wiki/index.php/Helminthic_.
| ..
| dekhn wrote:
| At least part of the adaptive immune system is implemented in
| the thymus. As an infant, the thymus makes examples of nearly
| every type of cell in the body and uses it as negative labelled
| examples to tune the false positive detector so it doesn't
| identify self as threat. From an information theory
| perspective, that's pretty extraordinary (you don't normally
| expect differentiated cells in an organ to act like cells from
| another organ).
|
| Another part of the adaptive immune system randomly shuffles
| different regions of genes together to produce enormous
| diversity (searching for a rare example of something that
| "works"), then picks the proteins from those genes that work
| best and distributes them throughout the body.
|
| Pretty amazing stuff.
| dm319 wrote:
| Yes, it's really fascinating stuff. Just to add to that,
| cells must present a continuous sample of their proteasome on
| the cell surface in the form of a short peptide 9-12 amino
| acids long. T cells will recognise when the cell is producing
| protein it shouldn't be (i.e. because it became cancerous or
| infected with a virus), even if only one amino acid is
| incorrect.
|
| It learns this in the thymus, which has a bizarre gene called
| AIRE which switches on genes from all over the body,
| essentially creating a representation of the entire body in
| the thymus gland as a sort of sandbox before they are let
| out.
|
| However, we don't have enough T cells to recognise every
| possible sequence of 11 amino acids (which would weigh around
| 1.5 tons), so T cells must be so-called 'cross-reactive'[1].
| And therefore other factors must go into how T cells respond
| to abnormalities.
|
| [1] https://www.nature.com/articles/nri3279
| dekhn wrote:
| yep, i was referring to AIRE without naming it. I saw a
| talk about it years ago and it blew my mind. In retrospect,
| it seems to just sort of fall out from the way you'd expect
| adaptive immunity to evolve, though.
| hallway_monitor wrote:
| I don't see many YouTube links posted here, but this
| Kurzgeasgt video blew my mind on this topic. Our immune
| system really is amazing.
|
| https://www.youtube.com/watch?v=LmpuerlbJu0
| whatshisface wrote:
| I would have expected it to send out T-cells around the
| fetal body to pick up protein signatures. I'm surprised
| that it makes them all in one place.
| amluto wrote:
| What an excellent idea!
|
| https://en.m.wikipedia.org/wiki/Peripheral_tolerance
| dekhn wrote:
| Thanks, I had forgotten about this and had actually mixed
| parts of it up with in-thymic training
| csdvrx wrote:
| Why go samples all the files from all over the filesystem
| if they are deterministically created from a piece of
| code you've got a copy of?
| k12sosse wrote:
| To check for corruption, I suppose (validation).
| rubicon33 wrote:
| Where can I read more about this? Can you recommend a book or
| something?
| mdswanson wrote:
| Can't help but to highly recommend the recent book by Philipp
| Dettmer, Immune: A Journey Into The Mysterious System That
| Keeps You Alive. It's fantastic and very readable: https://ww
| w.amazon.com/dp/B08XTNHRR5/ref=cm_sw_em_r_mt_dp_FX...
| whatshisface wrote:
| What's the connection to information theory?
| d0mine wrote:
| On information theory [unrelated to the discussion]: both
| digital information (stored in DNA --4-letters) and analog
| information (epigenome) can be manipulated for various
| effects e.g., "Lifespan: Why We Age--and Why We Don't Have
| To" by Sinclair https://www.amazon.com/dp/B07N4C6LGR/
| dekhn wrote:
| sorry, I shouldn't have thrown that in there.
| birdyrooster wrote:
| I guess titling the article "Multiple Sclerosis Causality" and
| then immediately going into EBV correlation seems like
| implication to me.
| [deleted]
| user90349083 wrote:
| For anyone dealing with an acute bout of Epstein-Barr Virus, I
| used 3 teaspoons a day of monolaurin for three weeks to kick
| it. Research monolaurin, it's fascinating stuff as an antiviral
| and I can personally attest to its effectiveness.
| csdvrx wrote:
| Or get actual antivirals. IIRC the same thing that's
| prescribed for HSV works on EBV
| user90349083 wrote:
| Some people prefer God's medicine to man's medicine. To
| each his own
| taneq wrote:
| If God is what it says on the tin then man's medicine
| _is_ God 's medicine. In fact if anything in this world
| isn't God's then God isn't both omniscient and
| omnipotent.
| user90349083 wrote:
| Monolaurin is found in human breast milk and coconuts.
| Acyclovir and Ganciclovir were synthesized by humans in a
| lab
| danachow wrote:
| Acyclovir is shown to decrease viral replication in vivo.
| There is no such evidence for monolaurin. So there's
| that.
| pbhjpbhj wrote:
| Human breast milk is also synthesised by humans!
|
| But, more seriously, don't you believe human medicine to
| be inspired by God? What about other human activity?
| dtech wrote:
| I never understood this argument. If God was against
| these medicines, why would He allow them to exist?...
| aserdf wrote:
| there is an experimental[0] treatment for MS, the "immune system
| reboot". i am a layperson but my understanding is stem cells are
| taken from the patient, the immune system is "destroyed" through
| immunosuppressants and the stem cells are then used to rebuild a
| "naive" immune system in the patient.
|
| based on the info in the OP, i wonder if the MS result from EBV
| is random; what is the probability of a rebooted immune system to
| follow the same path after exposure?
|
| [0] - https://www.nih.gov/news-events/nih-research-
| matters/immune-...
| wswope wrote:
| The initial susceptibility is mostly going to be predetermined
| by the MHC, and therefore remain the mostly the same. However,
| the pathological outcome is ostensibly a product of certain
| strains of pathogens plus luck of the draw on somatic
| hypermutation in response to said pathogen.
| whatshisface wrote:
| For something as rare as MS, "spin again" is ninety percent
| of a cure.
| holidayacct wrote:
| sabujp wrote:
| I was wondering what the genetic factors are that cause EBV to
| push people to get MS and found this excellent paper [1] (see the
| genetic susceptibility section).
|
| [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6334604/
|
| [2]
| https://www.google.com/search?q=genetic+factors+that+cause+E...
| wtetzner wrote:
| An interesting talk about someone who was able to reverse a lot
| of her MS symptoms with a change in diet:
| https://www.youtube.com/watch?v=KLjgBLwH3Wc
| moneywoes wrote:
| So basically no wheat, milk and processed foods?
| omreaderhn wrote:
| I skimmed through the presentation and I'm not sure how you
| arrived at that as your takeaway. The dietary advice given in
| there is much more complex than that.
| epgui wrote:
| Biochemist here: I would advise to exercise strong caution when
| looking at dietary changes in the context of MS.
|
| A lot of advice gives people the illusion that they have more
| control over their illness than they actually do, and a lot of
| the diets cause unnecessary harm (as a heuristic: the more
| things you cut out, the higher the potential for harm).
|
| That said, healthy eating and regular physical exercise is
| always a good idea, and even more so if you have any existing
| illness.
| Broken_Hippo wrote:
| Thank you!
|
| A lot of scam diets promise to cure MS. Books are sold. But
| the only real way to lessen the harm of the disease is
| through a combination of a modern medicine and luck (I've had
| both).
|
| Agree on the general healthy eating and activity, though.
| Broken_Hippo wrote:
| The Wahls protocol is a scam. It is not a cure for MS.
|
| Most folks with MS have RRMS - RR stands for relapsing
| remitting. Basically, you have a "flare" - when your body
| attacks your nerves. You have symptoms for a while, and then
| they start to go away. For context: I woke up one morning half
| blind. I could tell if there was a red object, but I couldn't
| make out what it was. Everything I could see out of my left eye
| was fuzzy. I couldn't make out the big "E" on the eye chart.
|
| But then, the lesion heals. You might be left with some damage,
| but a lot of it goes away. My vision returned and the optic
| nerve healed well. My vision is actually better in that eye
| than the other one. I have lingering numbness in my hands from
| time to time, but nothing like the fingertip-to-elbow pins and
| needles from a flare (I barely notice).
|
| All this means that a change in diet might seem to make your MS
| better. It definitely makes folks feel like they have control.
| But clinically, it does nothing. You are taking a big risk by
| doing this. What does work are modern DMTs - disease modifying
| treatments.
| garganzol wrote:
| It is not a scam. As you said, it is just not the ultimate
| treatment for MS. But it is a tool for MS management.
|
| Protocols like this are important parts of treatment for many
| people with similar conditions: T2DM, neuropathy, CFS/ME,
| Alzheimer, Parkinson, POTS.
|
| I want to stress that many people with conditions adjacent to
| MS do not experience that relapsing-remitting nature of a
| disease. And they confirm an immediate improvement when they
| swap junk processed foods with more natural choices.
| garganzol wrote:
| According to numerous observations, neurodegenerative diseases
| and the lack of energy (adenosine triphosphate, ATP) are
| tightly interconnected.
|
| Thanks for posting. And yes, there is mitochondria involved,
| once again.
| DantesKite wrote:
| Anecdotally I'm aware of someone who was able to reverse a lot
| of their symptoms with high doses of Vitamin D.
|
| There's a biochemist here giving advice about being cautious.
| That goes without saying, but it always strikes me as
| disingenuous careerism to recommend people with terrible
| illnesses to not experiment. That's the bedrock of scientific
| inquiry.
|
| It may be the case there's nothing out there that can help
| alleviate MS even a little, but it's worth trying, especially
| if the cost is low and the burden of the disease is high.
| garganzol wrote:
| I confirm the effects of vitamin D3 with my own observations.
|
| Vitamin D3 is an adaptogen for the immune system, it is an
| antioxidant in mitochondria, it plays so many different
| roles.
|
| No wonder it has such a beneficial effect on MS and CFS/ME
| patients who suffer from autoimmunity and mitochondrial
| manifestations. Vitamin D3 alone is not the ultimate cure per
| se, but it is a part of a possible cure for sure.
|
| Note of caution to those who supplement vitamin D3 for more
| than 2 months: always add vitamin K2 MK-7 to the mix to avoid
| the possible development of arterial calcification.
| Broken_Hippo wrote:
| _There's a biochemist here giving advice about being
| cautious. That goes without saying, but it always strikes me
| as disingenuous careerism to recommend people with terrible
| illnesses to not experiment. That's the bedrock of scientific
| inquiry._
|
| It isn't a bedrock of scientific inquiry if you aren't
| actually studying things. In fact, with MS it can make you so
| much worse off than you would be. People start the diets _as
| a substitute for proven medicine_. No diet has been proven to
| prevent a relapse, lessen their impact, nor cause you to have
| fewer relapse. With MS, every relapse you have increases your
| chances of disability and most relapses leaves effects. I
| lost hand strength and my fingertips have different feeling,
| for example, even though most of the numbness went away.
| Proven medicine has lessened the number of relapses folks
| have and often makes them milder: With the best medicine, we
| haven 't prevented relapses entirely - though a lot of
| neurologists treat a single relapse as a sign to switch
| medications to something that'll work better for you.
|
| I'll add that it isn't always worth trying. You aren't doing
| science unless you are part of a trial. Eating a strict diet
| isn't generally cheaper and takes time that you might not
| even have the energy for - all for something science hasn't
| been able to prove works. Just ancedotal stuff from random
| people without anything to back it up. I suspect the diet
| might just have a similar effect that weed does with
| spasticity: It doesn't medically cure some it, but people
| report being less bothered by them. And if that's the case,
| any dietary change would work and you probably shouldn't give
| money to the ones claiming miracles.
| dmitryminkovsky wrote:
| > and the team identified 1566 matched controls for them.
|
| Can anyone please shed some light on this? How would this work?
| onemoresoop wrote:
| Interestingly, Moderna has some trial for mRna vaccine for
| Epstein-Barr virus [0]
|
| [0]- https://www.clinicaltrialsarena.com/news/moderna-ebv-
| vaccine...
| animanoir wrote:
| I wish I was still a virgin.
| cjensen wrote:
| It's weird to me that they say 35 of the 801 MS cases were
| negative then positive before getting MS. The control group had
| 107 of 1566 were negative, but they don't bother to tell us how
| many of them ended up positive.
|
| I assume enlisting is a high-risk place to get EBV, and without
| info on the control I don't see how you can draw conclusions. But
| I'm basing this on the summary rather than the actual article:
| does the article have the info?
| couchand wrote:
| It's well known that (1) most people have EBV some time in
| their life, and (2) most people don't have MS. The news that
| any number of people who don't develop MS get EBV would be
| mundane.
| asdfasgasdgasdg wrote:
| Moderna are trialing an EBV vaccine. If it's successful, I wonder
| if we will see an end to MS. A cure would be great but failing
| that a prevention is almost as good.
| reedf1 wrote:
| Terrifying - I was EBV positive 4 years ago. It does not mention
| an association between EBV severity and MS, but I was very
| symptomatic and had post viral fatigue for around a year. I had
| no idea about the MS association!
| danuker wrote:
| > According to epidemiological studies, the EBV is estimated to
| be positive in more than 90% of the world's populations
|
| - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6008310/
|
| > A total of 2.8 million people are estimated to live with MS
| worldwide (35.9 per 100,000 population)
|
| - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7720355/
|
| Given that you have EBV, I guess you're in the unlucky 90%,
| increasing your odds from 359 in a million to a ...whopping...
| 399 in a million.
| BobbyJo wrote:
| Since the risk for the non-EBV group is 32x less, you'd be
| increasing your odds from like 11 in a million to 399 in a
| million no?
| andi999 wrote:
| If you knew you were negative yes, if the status was
| unknown then not.
| shadowgovt wrote:
| If you're EBV-positive, you're in good company... It infects
| something like 90% of the human population.
|
| Makes me wonder how many virii are out there that haven't been
| identified by modern medicine because their spread vector is so
| low-impact that they never even trigger symptoms. A virus like
| that would become real indistinguishable from "behavior of the
| human body" in not very much time if its infectivity was high.
| bigbillheck wrote:
| There's the anelloviruses which are at least as prevalent and
| nobody really knows what they do.
| axg11 wrote:
| Great question. A related question: how many undiscovered
| viruses exist that are beneficial to the host?
| csdvrx wrote:
| > A virus like that would become real indistinguishable from
| "behavior of the human body" in not very much time if its
| infectivity was high.
|
| My weird theory: how can we know then if aging (or its
| acceleration or the diseases usually linked to it) isn't the
| result of some infection that's super contagious and infects
| 100% of the people,
| inter_netuser wrote:
| Because it's very unlikely the same pathogen or disease
| would affect shrimp and humans in the exact same way.
| raylad wrote:
| It's not weird, it's the same idea I had back in the 1970s,
| but at that time things like retroviruses weren't known or
| understood.
|
| Now we know about endogenous retroviruses, and yes, they
| have infected everyone (going back millions of years) and
| yes, they do become more active in aging and are
| responsible for cancers and causing cellular senescence via
| DNA damage through retrotransposon activity.
|
| You can inhibit them with some of the same anti-retrovirals
| that work on HIV. Or nutritionally what may work is: high
| doses of cyanidin plus NAD precursors to stimulate SIRT6,
| which normally prevents at least one of these endogenous
| retroviruses, LINE1, from being expressed.
| csdvrx wrote:
| Super interesting. Please tell me more, like what you are
| taking besides that.
|
| I find it especially interesting how some multicellular
| macro organisms like jellyfish (one of the oldest
| ancestor of all non insect animals) have no aging, while
| humans and most other animals do.
|
| Could it be that their immune system or simply their
| evolutionary path prevented them from being exposed to
| such endoviruses, that may simply be too omnipresent (or
| long integrated) in about every other species to be
| selected out? (They could also present an advantage at
| the population scale, by ensuring a quick turnover and
| therefore more genetic evolution simply by filtering out
| not just the unadvantageous gene but the older adults,
| thus offering more opportunities for the new generation
| to replace them faster)
|
| This could be supported if jellyfish had less
| requirements for evolution, like a stable ecological
| niche - something I have no idea about!
| arbuge wrote:
| Calm down... from the article:
|
| "Note, though, that EBV would then be in the "necessary but not
| sufficient" category. There's something about the interaction
| of particular human immune systems with EBV infection that
| pushes things over into the pathological state of multiple
| sclerosis, and we don't really know how to identify these
| people. But that fits with what we know about infectious
| disease in general - everyone's different. The situation with
| Guillian-Barre is similar - a small number of people tip over
| into neurological pathology, for reasons unknown, and that one
| also often seems to follow some sort of viral infection."
| jka wrote:
| That's a good quote, thank you.
|
| About the use of "calm down" as an instruction: while your
| sentiment is good (to reduce another person's anxiety), it's
| not always possible for someone to follow that when it is
| received as an instruction. It's tricky to estimate other
| people's emotional state based on text, and for them to infer
| your tone. I'm overexplaining and sure that you probably
| understand all that; but it feels worth mentioning.
| jonnycomputer wrote:
| True. My first reaction to the directive, was that it was
| rude. Reading more of the context attenuated that
| impression, but I still think it could have been phrased
| less ... paternalistically?
| jka wrote:
| You could be onto something there, yep.
| jonnycomputer wrote:
| Communication is hard.
| zepto wrote:
| It is, but there are some easy heuristics before you get
| to the hard stuff.
|
| One is that telling people how they should feel about
| things is usually irritating.
| jka wrote:
| It certainly is.
|
| Here's a (probably totally unrelated) comment that I
| think is good food for thought:
| https://news.ycombinator.com/item?id=29917158
| jonnycomputer wrote:
| Interesting.
| jka wrote:
| :)
| dwmbt wrote:
| > About the use of "calm down" as an instruction: while
| your sentiment is good (to reduce another person's
| anxiety), it's not always possible for someone to follow
| that when it is received as an instruction.
|
| this is a pet peeve of mine. something i picked up when i
| was a counselor at a special needs camp was the idea that
| everyone (regardless of where you lie on any spectrum) has
| a unique sensitivity to criticism. it's important to NOT
| treat people how you would like to receive criticism, but
| to assess how you think they would best consume and digest
| it. obviously, this is extremely difficult on the internet
| and i'm just nitpicking but i had an altercation with my
| sibling earlier when they told me to 'calm down' so i'm
| still on edge about it.
|
| i'm sure OP doesn't need to hear this but typically i find
| that a good alternative is to nudge someone into
| rationality. not to say that the parent comment is
| irrational, but when you simply show someone why they may
| be overreacting, they may very well 'calm down' all by
| themselves. if said person refuses to acknowledge your
| rationale, it's likely they aren't welcome to any criticism
| at all and won't be 'calming down' in any capacity.
| RspecMAuthortah wrote:
| How do you even test for EBV? The GP I asked laughed it off
| when I was living in Canada basically saying I am already
| positive and no need to test.
| currency wrote:
| This was a study conducted by the military on soldiers. They
| all contributed three blood samples over a period of time
| that were tested for a large number of conditions. EBV was
| the only one that contributed to MS.
| rmind wrote:
| If you want to test whether you already _had_ EBV, then it
| would be a test for Immunoglobulin G (IgG) antibodies to the
| EBV viral capsid antigen (VCA). It shows whether the virus
| has established the latency in your body. Most laboratories
| would just label it as "EBV IgG", so just ask for that.
|
| If you are in your 30 or older, then you most likely have had
| it already.
| panabee wrote:
| thanks for sharing.
|
| does this test for EBV in both latent and lytic phases?
|
| EBV seems very adept at evading the immune system. does
| this also impact our ability to perform accurate detection
| (i.e., could current methods yield false negatives)?
| rmind wrote:
| EBV VCA IgG antibodies remain present for the rest of
| your life, as your immune system maintains certain
| antibody levels to keep the virus in check (it's a
| delicate host-virus balance).
|
| EBV VCA IgM indicates a primary EBV infection and these
| antibodies remain for a few months, until seroconversion
| happens. They might not necessarily be present
| immediately. During the primary infection, the virus is
| in active lytic replication which can accurately be shown
| by an EBV PCR test.
|
| Once the virus establishes latency, EBV PCR will be
| negative. It may occasionally become positive when EBV
| reactivates, but it may also reactivate in other
| compartments i.e. it infects more than just B-cells and
| the standard PCR test wouldn't show that. There are more
| antibodies involved and the whole thing is more complex
| than just the lytic and latent cycles.. the immune system
| is very complex.
| csdvrx wrote:
| They have like 2 separate tests: one for old EBV (IGG)
| and one for new EBV (IGM or maybe it's the other way
| around?)
|
| IDK about false positive though
| cestith wrote:
| There are at least two tests for it, or at least there were
| in the mid 1990s. One's a quick clinical test with lots of
| false negatives than can be done in-office but unless it's a
| campus healthcare clinic at a university they probably don't
| bother. The other is a more sensitive lab test that takes a
| few days. If you're having a really serious set of symptoms
| they may test to confirm it's not something else. If it's a
| minor case, two weeks of bedrest fix a lot of issues in a
| young adult and you do probably already have it anyway.
| epgui wrote:
| You can test for pretty much anything in a research setting.
|
| In a clinical setting, doctors will rely a lot on heuristics
| and practical considerations, and there may not be any
| clinical testing available.
| bluGill wrote:
| Even if there is a test, sometimes it is insanely expensive
| and so they won't give it if they can find any other way to
| decide.
| lalaland1125 wrote:
| One important thing to note is that EBV is extremely prevalent.
| Almost everyone gets it eventually and very few of those people
| develop MS.
| jonnycomputer wrote:
| But a lot of people don't really develop severe symptoms
| either, right?
| Broken_Hippo wrote:
| Many if not most folks dont' even realize they get it
| because they catch EBV as a child. In children, it
| generally causes no symptoms or symptoms so mild that they
| are dismissed as a normal childhood virus. You know, the
| sort you miss 2 days of school for and then go on. This is
| the reason most folks don't know they've had it.
|
| When we get older - teens and adults -, we are more likely
| to have it develop into mono or other things that
| realistically make your life difficult for a while.
| cestith wrote:
| Some develop no noticeable symptoms and many develop mainly
| annoying ones for a few weeks to a few months. I had the
| misfortune to develop symptoms from infectious
| mononucleosis shortly after minor surgery. My GP and
| surgeon kept giving me antibiotics and sending me back to
| uni. Finally after several months of fatigue, nausea, and
| depressed appetite I wandered into campus health jaundiced
| with a 104o F fever and a temporarily enlarged liver. I
| ended up withdrawing from that semester and retroactively
| from the previous one. I was ordered into a month of
| bedrest and half a year of decreased physical activity
| while recovering. So I guess we could say there's a wide
| range of severity, partly depending on how soon it's
| addressed.
| marvin wrote:
| When I had it, my doctor said that if I was a professional
| athlete, the standard outcome would be to just consider the
| current season lost and switch focus to getting well again
| in time for the next.
|
| I was relatively useless for two weeks and then spent the
| next four months getting back to my normal energy levels.
| "Severe" is a question of definitions, I think. I wouldn't
| consider that kind of illness severe, but it certainly put
| a dent in things for a while. Properly inconvenient, I'd
| say. I think this degree is pretty common.
| peter303 wrote:
| Possibly a co-factor, since many get EBV and few MS.
| nefitty wrote:
| The article says EBV is prevalent and is probably necessary but
| not sufficient for MS. If I was in that position I would look
| at my gene test results for any markers that correlate with MS.
| The more of those markers, the more intensely I would
| prioritize following relevant interventions.
| nradov wrote:
| What are the relevant interventions? Which genes correlate
| with MS?
| nefitty wrote:
| That's the independent study part. I wish I could be more
| help but that research is time and money intensive, and not
| guaranteed to be fruitful. It also involves review of
| multiple studies, sometimes several dozen. Then it's about
| seeing which ones are relevant to an individual's specific
| genetic mutations.
|
| I'm currently going through dozens of reports from
| SelfDecode, and that's after massive amounts of work on
| their end. I think I'm out a few hundred bucks so far, but
| it is an amazing service. I will soon seek their genetic
| consultation service, which is about $1k, and their lab
| testing service.
| mwint wrote:
| Genuinely curious, what's your ultimate goal here? What
| do you optimize for? Total life-years, sum quality-of-
| life, etc.?
|
| Seems like picking out the diseases you don't want to
| get/die from is a way to go nuts; curious how you're
| thinking about this.
| f38zf5vdt wrote:
| If you're going to develop MS as an adult after getting EBV
| mononucleosis, it's likely that it will be soon (5-10 years)
| after you have the initial infection as an adult. There's only
| a long delay in children according to one study. [1] Every
| passing year the probability of getting MS should decay after
| that.
|
| Female sex and EBV mononucleosis during adolescence are the
| biggest risk factors.
|
| [1] https://nn.neurology.org/content/4/3/e308
| config_yml wrote:
| Interesting. My sister and I both had mononucleosis before
| puberty, and she was diagnosed with MS in her late twenties.
| Broken_Hippo wrote:
| Scores of folks with MS never had mono. I'm one of those. It
| isn't mono that is the risk factor, but EBV itself.
| [deleted]
| [deleted]
| cjensen wrote:
| EBV causes more severe symptoms the older you are. So everyone
| here who remembers getting it and it being terrible? That's
| because you got it as an adult. If you get it as a kid, it can
| be asymptomatic.
|
| I got it at 36 and had a fever that leveled me for 3 weeks.
| Between "wait 1 week before bothering your doctor" and multiple
| rounds of tests, they didn't even diagnose it as EBV until the
| 3rd week.
| csdvrx wrote:
| I got at 21 IIRC and I was in bed for a few weeks and the
| doctor started fearing I had a blood cancer or something
| given how abnormal the tests were until he finally got the
| idea to test for EBV and it came back super positive.
|
| Never before was I so happy to get tested positive for
| something lol
|
| It's been a few years and I think I'm fine but due to hedonic
| adaptation etc maybe for all I know I operate at like 70% of
| my previous capacity and don't even realize it
|
| So I'm super interested in all that new research and I can't
| wait until we get mRNA vaccines against EBV!!
| MaximumYComb wrote:
| Wow, I was also EBV positive ~4 years ago (45 months), was
| symptomatic and I had post viral fatigue for around a year. It
| was 12 months before I could do light physical training and it
| was around 2.5 years before I could train physically at high
| intensity.
| csdvrx wrote:
| Do you have a baseline to compare or are you only relying on
| your memory?
|
| I got it at 21 and now I fear I may operate at a lower
| overall potential since I don't have a baseline to compare to
| Severian wrote:
| Found this in my news feed, so this timely. Good news I guess!
|
| https://www.forbes.com/sites/roberthart/2022/01/14/moderna-s...
| Miner49er wrote:
| Is there any evidence that the vaccine wouldn't also cause
| MS? From my understanding, MS is caused by the immune
| response, and the vaccine would trigger a similar (or same?)
| immune response.
| garganzol wrote:
| There is one more condition you may be interested in: CFS/ME.
| It manifests itself primarily as a chronic fatigue and is
| believed to onset after a trigger event: virus, intoxication,
| hypoxia, stress, and the like.
|
| I talked to some people with MS and most of them told me the
| same story: the trigger event, followed by some time, then
| onset of a full-blown MS.
|
| I wonder: are those diseases really different? Or maybe this is
| the very same disease but with a bit different outcomes:
| myalgic encephalopathy vs sclerous plaques. Both are driven by
| the inflammation, both have the same initiating sequence.
|
| What leads me to strongly suspect that it may be just different
| manifestations of the same disease is the involvement of
| mitochondria in both MS and CFS/ME.
| kennethh wrote:
| In Bergen in Norway we had a big outbreak of Giardia parasite
| and a lot of people got CFS/ME after that. The Giardia was
| big because the parasites came into the drinking water from
| one of the water sources. I myself had this for of this for
| many years afterwards but one do not notice it since before
| you get rid of it. I was able to function normally but
| totally lacked energy, and everything was a chore. It was
| like the feeling the first time one drinks coffee and
| experience the way the fog clears up.
|
| Conclusion. The study shows that Giardia duodenalis may
| induce CFS persisting as long as five years after the
| infection. Obstructive sleep apnoea/hypopnoea syndrome,
| depression and anxiety were important differential diagnoses,
| or possibly comorbidities, to post-infectious fatigue in this
| study.
|
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598369/#:~:tex.
| ...
|
| Also very impressed with google when searching for: giardia
| leads to CFS
| rmind wrote:
| Back in 1980s, there were proposals for a "chronic
| mononucleosis" or "chronic mononucleosis syndrome" as a
| diagnosis / standard disease. There were very comprehensive
| studies trying to investigate the patients who had chronic
| fatigue and other long lasting debilitating symptoms. After a
| good decade of studies, the research community found that
| this group of patients is very consistent (their complaints,
| symptoms, etiology), but failed to prove EBV as a cause
| (although the studies did not disprove it either) or at least
| come up with a clear serological diagnostic criteria. So, in
| 1990s they decided to define a generic Chronic Fatigue
| Syndrome (CFS) as a standardized disease. Other viruses and
| pathogens can cause CFS/ME and a broader definition would
| sometimes include even psychosomatic patients, so as a result
| CFS/ME has been quite discredited.
|
| Diagnostic techniques evolved and research progressed. In the
| recent decade, new studies are very close to proving that EBV
| is indeed a likely cause of CFS/ME (well, one segment, as
| there are other causes too). Reference:
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7912523/
| radicalbyte wrote:
| I have this pet theory that CFS/ME is what a lot of long-
| covid patients are suffering. I knew a few people who have
| been affected by it, and it really limits them. Just as long-
| covid seems to.
| garganzol wrote:
| I came to the same conclusion as well. Moreover, I was
| somewhat successful in healing post-viral CFS/ME using the
| therapy targeted at mitochondria with large doses of B1 and
| B3 vitamins [1].
|
| [1] https://news.ycombinator.com/item?id=29138006
| PaulKeeble wrote:
| Its worth noting that 80% of those the develop post viral
| conditions just recover, we don't know why. It is
| unlikely your intervention is the reason you recovered,
| the majority of people do even if they do nothing at all.
| We do know that those that rest and stay below their
| energy budget have a better chance but that is about it,
| nothing else has shown efficacy.
| garganzol wrote:
| Intervention was only applied to people who did not
| recover by themselves. But almost all of them recovered
| after intervention which leads me to believe that we are
| onto something here.
| csdvrx wrote:
| > using the therapy targeted at mitochondria with large
| doses of B1 and B3 vitamins
|
| commercially available under the brand names... "Red
| Bull" and "Monster"
| garganzol wrote:
| Nope. They do not contain the key element - vitamin B1
| which is also called thiamine. Instead, they do contain
| large doses of caffeine which is known to abruptly
| inhibit thiamine absorption in the body leading to
| mitochondrial ETC inhibition when a person has deficit.
|
| Then comes sugar - those drinks contain too much of it
| causing the unneeded insulin spikes. Sugar free variants
| are even worse - they (esp. aspartame) cause the insulin
| spikes as well but lead to insulin resistance progression
| much faster [1]. By the way, Insulin resistance and
| hyperlipidemia are hallmark signs of mitochondrial
| dysfunction.
|
| Yes, they do contain some 10-20 mg of B3 (nicotinamide)
| and that's it. Not enough for the treatment; other key
| elements are missing.
|
| That's why people with CFS/ME condition do not feel
| better after energy drinks, usually they feel even worse.
|
| [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7014832/
| csdvrx wrote:
| Super interesting thank you!
|
| They already have B3 B6 B12 (my mistake about M1)
|
| So the energy drinks should contain B1 or be taken with
| B1, is that what you say? If they don't already have B1,
| why is it so given the other vitamin B? Could it be for a
| good reason?
|
| About insulin resistance, Monster contains sucralose and
| acetasulfame. It's not clear if the effect reported with
| aspartame also happen with these. Still, a super
| interesting thing to check - one of the many reasons I
| love HN!
| thewebcount wrote:
| And along with CFS/ME, also look up POTS, MCAS/MCAD, and EDS.
| My wife had a very bad bout of mono in late high school and
| 15 years later developed POTS, MCAS, and what the
| rheumatologist called "unspecified connective tissue
| disorder," which seems like a mild case of EDS. After 10-15
| years of trying treatments, she's significantly worse off.
| :-/
|
| There are tons of people (mostly women) out there with this
| set of conditions, and they're only starting to be taken
| seriously. It's a set of life-altering conditions and dealing
| with the medical system when you have it can be infuriating
| and exhausting. I hope you don't have any of these things.
| garganzol wrote:
| POTS, MCAD-like (hyperlipidemia) and inflammatory
| conditions are triggered by CFS/ME as well.
|
| I am really puzzled: are we dealing with the same thing but
| under different names?
|
| For reference, NSAIDs combined with high-dose vitamin
| therapy help to resolve those conditions in people with
| CFS/ME.
| mturmon wrote:
| My wife also has MCAS, POTS, and a connective tissue
| disorder that is not at the level of EDS. Was diagnosed
| about 4 years ago and is on treatments to suppress some
| immune responses, that has been helpful at taking the edge
| off some symptoms. It was like tumblers clicking into place
| when she saw a specialist and got the diagnosis, so many
| rather disparate, long-term symptoms all from the same
| cause.
| aljungberg wrote:
| The parallel to Guillan Barre Syndrome seems intuitive. MS and
| GBS are both autoimmune disorders which damage myelin. MS is
| slower and chronic while GBS is acute and rarely relapses. What
| if MS is a low grade persistent immune response to a chronic
| viral infection such that those bad antibodies are created in
| small amounts indefinitely?
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