Multiple Sclerosis Causality
science.org
science.org
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.
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.
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.
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.
(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).
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.
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 :)
He is the inventor of the triple abx therapy for H.pilory so I would listen to what he says.
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)
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_...
The prevalence of autoimmune diseases went up during a particular period of time while hygiene increased while other factors went missing that seems important for the regulation of our immune system.
But, more seriously, don't you believe human medicine to be inspired by God? What about other human activity?
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.
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.)
Still a super interesting paper
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.
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.
He also got a severe mononucleosis infection before being diagnosed, and at that time we all thought that could have been the cause.
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...
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.
The whole point of the article is that this isn't the case.
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.
https://denovo.substack.com/p/epstein-barr-virus-more-maladi...
Something like CRISPR/Cas9 editing may be the way to treat persistent EBV and other herpesvirus infections.
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:
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.
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.
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.
[1] https://assets.researchsquare.com/files/rs-1139035/v1_covere... (Figure 1)
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!
[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
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.
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.
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.
"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-Barré 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."
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.
Here's a (probably totally unrelated) comment that I think is good food for thought: https://news.ycombinator.com/item?id=29917158
One is that telling people how they should feel about things is usually irritating.
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.
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.
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.
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.
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.
My ultimate goal is to address some weird ADHD-style issues and an autoimmune disease, holistically. When I go to a stomach doctor he gives me stuff for my stomach, but never asks about how my brain feels, about fatigue, about my skin, etc. I don't blame doctors for specialization.
I've given up on expecting them to be able to "fix my car". That would be silly to ask of an actual mechanic. What I'm doing instead is studying, tweaking and fixing what I can through lifestyle and careful supplementation. Basically, I'm starting with filling the tires with air, changing the oil, etc. Then once I realize my car is still violently wobbling, I'll have a list of what I've fixed myself, and the mechanic can focus on more complex wobble factors.
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.
commercially available under the brand names... "Red Bull" and "Monster"
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.
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!
It is better to have B1 in everything that involves energy instead of caffeine. But B1 will hardly be noticed by the general public while caffeine is addictive for many. Energy drink producers clearly maximize for profits and not for health.
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/
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.
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.
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
- 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.
Female sex and EBV mononucleosis during adolescence are the biggest risk factors.
https://www.forbes.com/sites/roberthart/2022/01/14/moderna-s...
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.
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,
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.
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!
In a clinical setting, doctors will rely a lot on heuristics and practical considerations, and there may not be any clinical testing available.
If you are in your 30 or older, then you most likely have had it already.
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)?
IDK about false positive though
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.
1. if VCA IgG antibodies persist for life, how does EBV reactivate?
2. when you say, "may also reactivate in other compartments," this implies that standard PCR tests only verify infection in b-cells? what tests verify infection/activity in epithelial cells?
3. are you on social media? would love to follow you.
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
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.
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!!
More info: https://www.nature.com/articles/d41586-021-01835-w
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.
We don't know how common lots of things are in 1st world countries either, simply because we don't track.
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/
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?
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.
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.
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.
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".
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.)
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.)
If in one of these infinite observations flicking the switch off turns the light on your hypothesis is disproven. Hence disproof exists but proof is the domain of maths and logics. From this perspective 1:1 causality cannot be verified to exist.
[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6334604/
[2] https://www.google.com/search?q=genetic+factors+that+cause+E...
[0]- https://www.clinicaltrialsarena.com/news/moderna-ebv-vaccine...
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?
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-...
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.
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.
Thanks for posting. And yes, there is mitochondria involved, once again.
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.
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.
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.
When you’re talking about your own health, you’re an adult and you’re free to do what you want. When you’re talking about other people’s health, a more cautious approach is appropriate.
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.
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.
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.
Can anyone please shed some light on this? How would this work?
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.
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.
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.
It’s still an N of 1 case report from a medical evidence point of view so not likely to be widely applicable.
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.
I don’t know anyone with MS whose disease course went to effectively cured years, but I admit to being ignorant on the subject.
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.
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...
A sham includes things like misleading folks. Before the current treatments were accepted, they were in trials. People willingly participated, knowing it was experimental. Folks buying books of unproven cures aren't privy to the same sort of openness. Classic scam behavior.
(It doesn't just cause MS!)
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.
There are obviously other causative factors influencing MS. One is EBV, the other is likely a specific type of immune system.
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.
Same with the Corona vaccines unlike this implies https://news.ycombinator.com/item?id=29942670
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.
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.
"Study finds hydroxychloroquine delays disability for least treatable form of multiple sclerosis" [0]
[0]: https://medicalxpress.com/news/2022-01-hydroxychloroquine-di...
https://medicalxpress.com/news/2022-01-hydroxychloroquine-di...
https://medicalxpress.com/news/2022-01-hydroxychloroquine-di...