Is m.e. yet another form of EDS?

Oliver3

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Im somewhat more flexible than average, but don't have EDS, nor do many others, so ME/CFS is not a subset of EDS.

However, there does seem to be a subset of those who do have ME/CFS who also have EDS or related conditions.

As for RCCX, not all of us have the CYP21A2 or TNXB mutations, so it's not an explanation for everyone. And many of us don't have psychiatric problems, which seem to be pushed by people who want to cut us off from disability.
We don't know much about eds ...this is my point.
Vulnerability to psychological stress is part of EDS and rcccx.
Explain these cluster s to me. How fibro lyne etc look virtually if not the same as eds.The building block of life at a physichal level is collagen in part. You ever heard the expression..he's got thick skin.
That's a metaphor for our propensity towards stress vulnerability. All along this we are impacted by collagen. From psychological integrity, physichal, chemichal and emotional problem.
It's a full body, system disease..I'm not saying it's a psychological illness. I don't believe in seperating mind n body anyway.
Mental illness is not understood at all.
Neither is mast cell disease.
IBS
Mcas
Autism
Multiple chemichal sensitivities..etc..but they all cluster
 

Oliver3

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Im somewhat more flexible than average, but don't have EDS, nor do many others, so ME/CFS is not a subset of EDS.

However, there does seem to be a subset of those who do have ME/CFS who also have EDS or related conditions.

As for RCCX, not all of us have the CYP21A2 or TNXB mutations, so it's not an explanation for everyone. And many of us don't have psychiatric problems, which seem to be pushed by people who want to cut us off from disability.
Eds is not just about being flexible.. that's not what eds is gonna turn out to be.
Even vascular eds, which is a killer, I think, once investigated will turn out to be a spectrum disorder, with people being able to live into their 80s...I think we know nothing about eds and how it creates immune deficits and problems with viruses
 

Oliver3

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I think you have to be unlucky, and catch one of the viruses linked to ME/CFS while you are totally run down with stress and your immune system weak. You may not know you have caught a virus, as many times the acute symptoms can be mild or asymptomatic.


Dr Chia also discovered that another "recipe" for creating ME/CFS is to give a patient corticosteroid drugs while they have an acute viral infection. Giving steroids during the critical time of an acute infection can be a disaster.

Sometimes when you catch enterovirus, it can produce symptoms similar to allergies, so doctors think the patient may be having an allergic response, and then prescribe a course of corticosteroids. That can then turn that acute infection into chronic fatigue syndrome.
Unlucky..no...there are patterns to these people. Again allostatic load....you can break anyone in the end.
But, the Canary in the coalmine.
The first to get whacked are the sensitives.
It's not about being unlucky..unlucky to have the predisposing genes yes. But again stress vulnerability, virus vulnerability is part of a phenotype.
It's like you stop at the virus and don't rewind further
 

Oliver3

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That does not appear to be the case. Nobody gets ME/CFS after catching rhinovirus (a common cold virus), for example.

Norovirus (winter vomiting bug) will make you pretty sick, producing acute gastrointestinal symptom similar to enterovirus. And you get these major norovirus outbreaks on cruise ships. But you never hear of anyone getting ME/CFS after a norovirus infection, and there is nothing in the medical literature to suggest norovirus is in any way linked to ME/CFS.

There are many other viruses which are also not linked to ME/CFS: adenovirus, HHV-8, measles virus, mumps virus, rubella virus, rotavirus, bornavirus, influenzavirus, parainfluenza virus, metapneumovirus, astrovirus, polyomavirus and numerous others.

The range of viruses linked to ME/CFS are quite few, mainly just coxsackievirus B, echovirus, EBV, cytomegalovirus and HHV-6.

The SARS-CoV-2 coronavirus may be a new addition to this list, since the long COVID it can trigger looks like it may just be another form of ME/CFS.





The million dollar question is why some people develop ME/CFS from a virus like coxsackievirus B or Epstein-Barr virus, and others do not.

Studies show severe chronic emotional stress is common in the year prior to patients being hit with ME/CFS. Such chronic stress is known to weaken antiviral immunity (via raised cortisol). So we might speculate that if you catch a virus while your immune system is weak, it gets more of a chance to insinuate itself into your organs.

Other factors which have been linked to an increased risk of ME/CFS include organophosphate pesticide exposure and toxic mold exposure.

If you look at the viral epidemic outbreaks of ME/CFS, the peculiar thing is that these outbreaks were always localized to a specific area or institutional building. Once the virus spread outside that area, it lost most of its ability to cause ME/CFS.

So that suggests a dual-factor theory of ME/CFS, where a virus and some other (perhaps immunosuppressive) local factor work in tandem to cause ME/CFS.
Erm norovirus can trigger m.e.
In fact looks like Whitney came down with a nasty enterovirus.
There is no point speculating on which virus....because there are so many that can cause m.e. you know that as well as I do.
Mold toxicity, again that's a collagen problem.
We are the sensitives of the tribe. We are built that way for a reason.
We most likely have more ancient DNA which makes us bad detoxifiers in this modern world.
But it always comes back to BEFORE the viruses. It's the phenotype we are born into.
Even in Karl Jung's work, he touched on phenotype , genetic phenotype, in his idea of archetype. We are all playing out a lot of ghosts in our system. Our propensity to stress and virus is just one if these.
I'm sorry, but being unlucky is a very weak argument, when we always see cluster conditions around m.e. involving collagen. This is pre and post illness, whether you noticed it or not
 

Hip

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Erm norovirus can trigger m.e.
Please provide evidence, a study for example. I have never seen any studies or even anecdotal evidence to link norovirus to ME/CFS.



There is no point speculating on which virus....because there are so many that can cause m.e. you know that as well as I do.
If you think that viruses outside of the standard list I mentioned earlier are linked to ME/CFS, please provide evidence for that. Note that opinions or speculations are not evidence. Scientific studies provide evidence.

Studies have shown enteroviruses and herpesviruses are linked to ME/CFS. Also some other pathogens too, like parvovirus B19, Ross River virus, West Nile virus, Chlamydia pneumoniae, Giardia lamblia, Coxiella burnetii.

These have a demonstrated link to ME/CFS in studies.



Mold toxicity, again that's a collagen problem.
Please provide evidence for that assertion. Dr Shoemaker finds that mold toxin susceptibility is due to having certain HLA DR haplotypes (which can be tested for). Although I don't think anyone has replicated his results, so take with a pinch of salt.
 
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Oliver3

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Please provide evidence, a study for example. I have never seen any studies or even anecdotal evidence to link norovirus to ME/CFS.





If you think that viruses outside of the standard list I mentioned earlier are linked to ME/CFS, please provide evidence for that. Note that opinions or speculations are not evidence. Scientific studies provide evidence.

Studies have shown enteroviruses and herpesviruses are linked to ME/CFS. Also some other pathogens too, like parvovirus B19, Ross River virus, West Nile virus, Chlamydia pneumoniae, Giardia lamblia, Coxiella burnetii.

These have a demonstrated link to ME/CFS in studies.





Please provide evidence for that assertion. Dr Shoemaker finds that mold toxin susceptibility is due to having certain HLA DR haplotypes (which can be tested for). Although I don't think anyone has replicated his results, so take with a pinch of salt.
https://www.elevationwellness.co/post/eds-the-extracellular-matrix-toxin-overload
 

Oliver3

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Please provide evidence, a study for example. I have never seen any studies or even anecdotal evidence to link norovirus to ME/CFS.





If you think that viruses outside of the standard list I mentioned earlier are linked to ME/CFS, please provide evidence for that. Note that opinions or speculations are not evidence. Scientific studies provide evidence.

Studies have shown enteroviruses and herpesviruses are linked to ME/CFS. Also some other pathogens too, like parvovirus B19, Ross River virus, West Nile virus, Chlamydia pneumoniae, Giardia lamblia, Coxiella burnetii.

These have a demonstrated link to ME/CFS in studies.





Please provide evidence for that assertion. Dr Shoemaker finds that mold toxin susceptibility is due to having certain HLA DR haplotypes (which can be tested for). Although I don't think anyone has replicated his results, so take with a pinch of salt.
I could pluck out articles like this all day.
Here are scientist is now conducting clinical trial to see the connections between ehlers danlos and autism. How glial cells, the immune system work in these conditions in a very similar way.
At the monentz this type of idea is in its infancy...but it's bleedin obvious all these disorders are connected by collagen faults.
At the moment, none of the work on any of the eds is complete. ...in fact they kinda feel like syndromes with a bit of gene location thrown in.
Nobody understands how these viruses interact with an eds type dominant immune system, and the general biology.
Not looking at this is a biiig mistake.
M.e. is not acquired eds..
It's a form of eds.
By the way, for those saying gut feelings mean nothing, they're what science is initially based as the scientist in this piece admits was her intro into this... observation and a gut feeling
All science at the moment is basically preliminary in these diseases....
I'd wager my house that this is the track to go down.
It's a shame CRISPR can't knock out the faults
 

Pearshaped

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I do not know of course, but ME as another Form of EDS makes no sense to me.
EDS and even hEDS are gentetic, while ME is infectious (at least according to Hyde and others) I know a family friend with classic EDS, she is often really fatigued (like sleepy) but being fatigued and having PENE are two different things. If ME was a form of EDS it wouldnt explain the metabolic issues either.
 

Oliver3

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I do not know of course, but ME as another Form of EDS makes no sense to me.
EDS and even hEDS are gentetic, while ME is infectious (at least according to Hyde and others) I know a family friend with classic EDS, she is often really fatigued (like sleepy) but being fatigued and having PENE are two different things. If ME was a form of EDS it wouldnt explain the metabolic issues either.
I have a friend with eds ..exactly same symptoms as me.
As I point out eds is in autism, fibro, Lyme. So much crossover.
You can have eds and not develop m.e. but if you push a weak body, through virus, or a chemichal and emotional stressor, then you will develop CFS.
Having eds genetics primes you. It allows for viral and autoimmuniy activation.
I really want science on how collagen affects the immune system.
Are you aware of the rcccx theory. The fact that you know someone with eds is no suprise to me.
Most people with m.e. have friends or are generally attracted onna personal and sexual basis to people with eds.
Birds if a feather flock together.
My point is, m.e. is another form of as yet undiagnosed eds.
Your mistaking the infection as ground zero.
First came the genetic propensity to be attacked more easily by virus and to have s system more prone to hyperinflation.
Then a virus came along and kickstarted the orocess
 

Oliver3

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I do not know of course, but ME as another Form of EDS makes no sense to me.
EDS and even hEDS are gentetic, while ME is infectious (at least according to Hyde and others) I know a family friend with classic EDS, she is often really fatigued (like sleepy) but being fatigued and having PENE are two different things. If ME was a form of EDS it wouldnt explain the metabolic issues either.
Btw, my friend with type 3 EDS gas PEM, dysautomnia( pots) g.i. issues. Terrible fatigue. I honestly can't see any difference except a doctor's diagnosis.
Infection is not the start of m.e.
 

Oliver3

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I do not know of course, but ME as another Form of EDS makes no sense to me.
EDS and even hEDS are gentetic, while ME is infectious (at least according to Hyde and others) I know a family friend with classic EDS, she is often really fatigued (like sleepy) but being fatigued and having PENE are two different things. If ME was a form of EDS it wouldnt explain the metabolic issues either.
Bob naviaux , the mitochondrial expert says all m.e. people share a metabolic recognisable profile, which includes a propensity towards stress and hyper sensitivity and PTSD like reactions.
Eds has the same trauts
 

JES

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I don't see why this genetic propensity to for example having a bad response to certain viruses is limited to EDS only. Have you seen studies that examine what predisposes people to have a bad case of acute COVID or long COVID? Scientists have already identified quite a few gene variants that predisposes to severe COVID (source) and I don't see any mention of them being related to EDS. Long COVID studies are only at their beginning, but I wouldn't be surprised to see predisposing variants being uncovered in the near future. And then we have ME/CFS, which I do agree with you is almost certainly at least partially linked to gene variants.

Let's assume that EDS is the ground zero behind microglial priming, autoimmunity and persisting viral infections. The problem is that none of these mentioned symptoms are EDS specific. EDS is recognized by collagen defects, so we are currently left with speculating that microglial activation, autoimmunity an persisting viral infection are downstream effects of EDS. The problem then becomes that you have connected EDS to all these downstream effects and assumed they are EDS specific and that there are no other genetic variants that could increase likelihood of microglial activation, autoimmunity, persisting viral infection and eventually, ME/CFS. This to me seems like a bold claim.

The way I see it, autoimmunity, microglial priming and persisting viral infections could be linked to all kinds of genetic predispositions. Every predisposing gene that is tied to for example microglial priming or an excessive/weak immune response to pathogens can at least be hypothesized to be a risk factor in triggering ME/CFS, which would then refute the argument that EDS is always at ground zero.
 
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Oliver3

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I don't see why this genetic propensity to for example having a bad response to certain viruses is limited to EDS only. Have you seen studies that examine what predisposes people to have a bad case of acute COVID or long COVID? Scientists have already identified quite a few gene variants that predisposes to severe COVID (source) and I don't see any mention of them being related to EDS. Long COVID studies are only at their beginning, but I wouldn't be surprised to see predisposing variants being uncovered in the near future. And then we have ME/CFS, which I do agree with you is almost certainly at least partially linked to gene variants.

Let's assume that EDS is the ground zero behind microglial priming, autoimmunity and persisting viral infections. The problem is that none of these mentioned symptoms are EDS specific. EDS is recognized by collagen defects, so we are currently left with speculating that microglial activation, autoimmunity an persisting viral infection are downstream effects of EDS. The problem then becomes that you have connected EDS to all these downstream effects and assumed they are EDS specific and that there are no other genetic variants that could increase likelihood of microglial activation, autoimmunity, persisting viral infection and eventually, ME/CFS. This to me seems like a bold claim.

The way I see it, autoimmunity, microglial priming and persisting viral infections could be linked to all kinds of genetic predispositions. Every predisposing gene that is tied to for example microglial priming or an excessive/weak immune response to pathogens can at least be hypothesized to be a risk factor in triggering ME/CFS, which would then refute the argument that EDS is always at ground zero.
Eds is an almost redundant term tho isn't it, but I'm trying to make a general unifying assertion that the genes in eds are found in autism, fibro, Lyme's etc.
It's a spectrum disorder...just like autism where at the borders one can say "she has misophonia" for example but is in no other way impeded.
The same is applied to these spectrum disorders....
I mean I saw Ron speculating that m.e. might be a form of m.s. that doesn't progress.
And ms shares similarities with eds.
These are all connective tissue diseases at base.
It's NOT an unknown pathogen. People want it to be that. I do. It's easier to treat!!!
But it's just not the case.
The ground zero is problems in the connective tissue that cascade.
I'd love CRISPR to be able to correct some of these genes one day.
The people with long covid...we will see. Some of them are just post viral fatigue case.
But most ling covid patients have just started their journey.
I'm certain that there will be a connective tissue correlation
 

Strawberry

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Can you give us more detail about your muscle problems?
I´ve had some issues also and maybe they have something in common/?
I started having difficulty gaining muscle, and rapid muscle fatigue. I had to quit snow skiing at age 21, then water skiing, then weight lifting, then I got the chronic sick at about age 27. I had to give up my seadoo in my late 40s. Another symptom from too much use, is muscle shaking. After playing on my seadoo for a while I’d barely be able to get out of the water, and my thigh muscles would be very visibly quivering. It freaked a few people out.
 

Rlman

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This sudden onset periodontal disease did not just happen in me, but also in some over 30 family and friends who caught the same virus from me (these people did not develop ME/CFS from the virus, although all of them became permanently more tired after catching my virus).

One person who caught my virus developed heart valve disease. Two others with my virus got sudden onset bowel rupture, requiring emergency surgery to fix.

Almost everyone who caught my virus developed sudden onset crêpe paper-like fine wrinkles on their skin.

This skin wrinkling happened very fast (over a period of about a year), so nothing to do with normal aging. Below is a picture of my hand, showing these crêpe paper-like wrinkles that suddenly appeared after I caught my coxsackievirus B4 virus. Nearly everyone else who caught my virus from me (over 30 people) developed the same wrinkling symptom.

View attachment 44277
Source: my website: Crêpe Paper-Like Fine Skin Wrinkling Symptom


Clearly these 30+ people could not have all suddenly developed hEDS at the same time, especially because hEDS is genetic, and these symptoms were occurring in friends not genetically related to me.

Because the virus I caught caused these connective tissue symptoms, I started investigating mechanisms by which an infection could cause this.

It turns out that the immune system, when fighting viruses, will secrete a family of enzymes called matrix metalloproteinases (MMP), which break down connective tissue components such as collagen and elastin.

My skin wrinkles look just like the skin disease called mid-dermal elastolysis (MDE), in which the elastin of the skin is broken down. The mechanism for loss of the elastic fibers in the skin seems to be linked to high levels of the enzyme elastase, and/or high levels of the enzyme MMP-9. Both degrade elastin.
Thanks for the explanation, but is there any way to suppress above tissue destroying enzymes? This would be a great help for me.
 

lauluce

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ius there any form of EDS without hypermobility? I don't seem to have that issue, but what I do have is the tendency to suffer from all sorts of injuries in my spine and joints, I have simply too much of those injuries to be a coincidence, my body seems to break as if it was made of paper. I also have detected I have a very severe and permanent vitamin c deficiency. I think it might well be the result of the body trying to constantly rebuild the damaged connective tissue , depleting the vitamin c in the production of new collagen . This deficiency hasn't been corrected with any cuantity of oral supplements, even reaching 8000mg per day, and it didn't even get corrected after six 1000vg IM vitamin C injections, I'm convinced that it simply isn't normal. What do you think? anybody with vitamin c deficiency?
 
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Please provide evidence, a study for example. I have never seen any studies or even anecdotal evidence to link norovirus to ME/CFS.
I've gotten repeated incidents of what would seem to be (potentially) NOROVirus to such a degree I believe I experience reactivations.

And it was something tied to these events sent me from mild ME to Moderate.- I went from functional ME to very debilitated in a few months. LIke an entirely different illness, frankly.

but there is no study, and there is no data.

its just my life, passing me by.