Is m.e. yet another form of EDS?

lenora

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@Oliver3.....I can only tell you after I've had this for 35 yrs. or so, that incredible numbers of reasons have come along, some proven to be true and others not. Yes, many of us have "gut reactions" as to what's causing what, but science doesn't work in that way. Many illnesses and cures have been thrown out the window in the amount of time I've been aboard. This will, I'm sure, continue.

Yes, in the future we'll also have proven many ideas that were simply that, ideas, during our time. Medicine changes and moves along....it's generally not overnight, but it does occur.

I have many conditions and expect to have many more before this ends. Who heard of things like autoimmune encephalitis 35 years ago? Now it's actually recognized. Types of surgery have changed, and we'd do well to listen and yes, some EDS symptoms will be proven and others won't.

No one is arguing your point, but we learn patience along the way also. Read about the latest research, but don't assume that everyone in the research world believes it or will follow it. I've seen incredible changes since we first started with absolutely nothing....and that includes the other illnesses I have. You may find the same, although I sincerely hope that something will be proven to help in a shorter time span than I've seen. L.
 

Oliver3

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@Oliver3.....I can only tell you after I've had this for 35 yrs. or so, that incredible numbers of reasons have come along, some proven to be true and others not. Yes, many of us have "gut reactions" as to what's causing what, but science doesn't work in that way. Many illnesses and cures have been thrown out the window in the amount of time I've been aboard. This will, I'm sure, continue.

Yes, in the future we'll also have proven many ideas that were simply that, ideas, during our time. Medicine changes and moves along....it's generally not overnight, but it does occur.

I have many conditions and expect to have many more before this ends. Who heard of things like autoimmune encephalitis 35 years ago? Now it's actually recognized. Types of surgery have changed, and we'd do well to listen and yes, some EDS symptoms will be proven and others won't.

No one is arguing your point, but we learn patience along the way also. Read about the latest research, but don't assume that everyone in the research world believes it or will follow it. I've seen incredible changes since we first started with absolutely nothing....and that includes the other illnesses I have. You may find the same, although I sincerely hope that something will be proven to help in a shorter time span than I've seen. L.
I too have been suffering a similar amount of time if it matters.
This is my experience of the disease. I'm not a scientist. But I can glean my own interpretation s . Us sufferers in some ways know more than any scientists.
You can see people with eds/ me/ Asperger's....it's written in their body type, faces, how they move, how they carry themselves.
I'm positive, but happy to be proven wrong, that eds is the bedrock from which virus, autoimmunity etc thrive. You need that genetic predisposition.
Sometimes science does come from a guy feeling.
The scientific method involves rigour..but observations in the field or gut feelings are often instigators.
I just think it's obvious there is something wrong in the collagen. I think the hunt for the virus is the wrong way to look at it.
Of course viral control is important. Mast cell activation. Glialcell activity...get them under control. But all these problems come from collagen.
I want regenerative medicine to get hold in eds and m.e. biopsies done of tissue etc.
I think every m.e. patient should be screened for all known eds types, eagle syndrome, nutcracker syndrome etc etc.
I disagree with your idea of the long view meaning ideas lose meaning.
We have to go through all these ideas, fully investigate them.
But what are we made of...collagen ...it's gotta be a massive factor
 

JES

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Why would collagen defects cause microglial activation? Microglia can be activated by a number of things and once they are sensitized, they move away from the neuroprotective state into a pro-inflammatory state. I don't see why microglial priming necessarily requires anything more than a viral infection at the wrong place and wrong time, followed by a faulty or excessive immune response.

One result I remember being observed in postviral ME/CFS is that the severity of the triggering infection predicts the likelihood of developing ME/CFS. The same seems to be the case with COVID. The more virus you get subjected to and the stronger the immune system has to work, the more likely you go on to develop acute symptoms or long COVID.
 

Oliver3

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Why would collagen defects cause microglial activation? Microglia can be activated by a number of things and once they are sensitized, they move away from the neuroprotective state into a pro-inflammatory state. I don't see why microglial priming necessarily requires anything more than a viral infection at the wrong place and wrong time, followed by a faulty or excessive immune response.

One result I remember being observed in postviral ME/CFS is that the severity of the triggering infection predicts the likelihood of developing ME/CFS. The same seems to be the case with COVID. The more virus you get subjected to and the stronger the immune system has to work, the more likely you go on to develop acute symptoms or long COVID.
Because, microglia are primed by mast cells. Mast cells are generally much more hyperactive in connective tissue disorder. Viruses have aneasier time in eds bodies.
The blood brain barrier is weaker in connective tissue disorder, letting in heavy metals etc that weaken immunity.
Let's agree that viral load plays a part, someone with eds or eds lite which I think m.d. is, is gonna have a harder time with that viral load.
Everyone has an allostatic load, a breaking point, where the body will shut down.
I saw Lewis Hamilton struggling on the podium with long covid. So of course anyone can get a post viral illness.
My point is, with m.e and it's eds traits, were already starting from a lower base of resistance and that's why these viruses get in us.
It's only my view but I feel it's right
 

lenora

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Yes, but glial activity can also be caused by injury, genetic disorders (apart from collagen) car accidents, etc. I think each of us has slightly different problems and most of them won't be solved at once. I believe there are so many reasons for our symptoms and that's where it's going to be hard for researchers. Gut instinct is good, but it's not the whole answer or even close to it.

We're seeing faster research than in the past. This is good and will continue. We're also seeing researchers who are especially trained to deal with our problems. No one's denying that collagen can be problem, but it isn't the entire answer. Yours, Lenora.
 

Oliver3

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Yes, but glial activity can also be caused by injury, genetic disorders (apart from collagen) car accidents, etc. I think each of us has slightly different problems and most of them won't be solved at once. I believe there are so many reasons for our symptoms and that's where it's going to be hard for researchers. Gut instinct is good, but it's not the whole answer or even close to it.

We're seeing faster research than in the past. This is good and will continue. We're also seeing researchers who are especially trained to deal with our problems. No one's denying that collagen can be problem, but it isn't the entire answer. Yours, Lenora.
It's the main answer. Of course anomalies, sub groups. I'm convinced of eds/ collagen being the key fault from which everything cascades.
I mean injury, that's a different matter but as a organic disease, eds is the entry point
Happy to be proven wrong. Just want it investigated with billions of pounds
 

Hip

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say you were fine before, but I'd suggest it was going to happen
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.

My Wrinkles.jpg

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.
 

Oliver3

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As I understand it from your reply, three to four people were affected after this virus.
That would sort of correlate with eds distribution.
You're the only one who has developed m.e.
I think m.e. is based on allostatic load tolerance. With eds, that's triggered at a much lower base.
Also I would say, that the RCCX theory, which I subscribe to talks about a general attraction of like minded and like bodied individuals.
I have noticed this phenomena amongst my own friends.
No, I'd say what you consider as ground zero was the last in a line of insults to your body.
I'm not saying everyone with eds has cfs, but I'm saying every , or virtually every are of cfs has eds in its genetic expression
 

Hip

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As I understand it from your reply, three to four people were affected after this virus.
Almost everybody (over 30 different people) got the skin wrinkling symptom after catching my Coxsackie B4 virus. These were people of all ages, from 30 to 80 years old. Within a year of catching my virus, they developed these unusual skin wrinkles.

The only people who did not seem to get the crêpe paper-like skin wrinkles were those under around 30 years old. Perhaps that may be down to a more youthful metabolism, or maybe a stronger immune system which better resisted the virus.


There are quite a few connective tissue diseases (lupus, rheumatoid arthritis, polymyositis, dermatomyositis, etc), and these are not linked to Ehlers-Danlos syndrome as far as I am aware.

They are however linked to pathogenic infections: rheumatoid arthritis is linked to parvovirus B19, Borrelia, and others; lupus is linked to parvovirus B19, Epstein-Barr virus and cytomegalovirus.

So having connective tissue symptoms does not necessarily imply you have EDS.



I'm not saying everyone with eds has cfs, but I'm saying every , or virtually every are of cfs has eds in its genetic expression
The Bragée study finds that 20% of ME/CFS patients meet the hEDS criteria. That's a substantial amount, but it is not 100%.
 

Oliver3

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Almost everybody (over 30 different people) got the skin wrinkling symptom after catching my Coxsackie B4 virus. These were people of all ages, from 30 to 80 years old. Within a year of catching my virus, they developed these unusual skin wrinkles.

The only people who did not seem to get the crêpe paper-like skin wrinkles were those under around 30 years old. Perhaps that may be down to a more youthful metabolism, or maybe a stronger immune system which better resisted the virus.


There are quite a few connective tissue diseases (lupus, rheumatoid arthritis, polymyositis, dermatomyositis, etc), and these are not linked to Ehlers-Danlos syndrome as far as I am aware.

They are however linked to pathogenic infections: rheumatoid arthritis is linked to parvovirus B19, Borrelia, and others; lupus is linked to parvovirus B19, Epstein-Barr virus and cytomegalovirus.

So having connective tissue symptoms does not necessarily imply you have EDS.





The Bragée study finds that 20% of ME/CFS patients meet the hEDS criteria. That's a substantial amount, but it is not 100%.
My point all along hip is that the genetic blue prints for eds have not been written yet. We have basic criteria for assessing types and new variations ate added all the time.
Lots of people catch viruses everyday, but they don't react like we do. They have to have a very high allostatic load, like being a marathon runner to get into the sane bother we get into with viruses.
Heds is not the only form of EDS .
Basically by around 70 most people have an acquired form of EDS but our collagen is different.
It always was and I think concentrating on the virus is the wrong way to look at this..because any virus can cause m.e. it's why the virus reacts certain ways. Across fibro/ Lyme's/ m.e/ long covid, we see the same thing.
A tendency towards perfectionism and pushing through, heightened sensoerial overload, abstract thinking, pots, central pain sensitisation, IBS, dysautomnia, autoimmuniy, a prediliction towards food sensitivities, chemichal sensitivities, anxiety, mast cell activation syndrome..the list is sadly too long to mention. But it's in all these conditions.
So what's the common denominator. Well viruses. But any virus it seems. And why does it affect certain individuals, and it expresses very similarly to EDS. My friend has eds and I " don't" after being given the oncecover.
Our symptoms are exactly the same. My official diagnosis is fibro, bit I tend towards m.e. in my own personal constellation of symptoms.
So what is holding all these together..sure viruses play a part but you're getting it the wrong way round hip. The viruses have an opening because there is a fault in our collagen . Somehow this creates a weekend immune system and a tend towards immunity and hyperreaction.
It's just the way it is
 

Oliver3

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Well , thanks for the input, but I'd say definitely yes. What is the link between eds and cfs in your opinion.
Both Ron Davies and Whitney have it...the link is too strong a signal to be ignored. Check out the rccx theory. It might change your mind
 

Hip

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because any virus can cause m.e.
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.



Lots of people catch viruses everyday, but they don't react like we do.
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.
 

Boba

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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
This is so me… 1 shitty year and u come down with this disease.
 

Hip

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This is so me… 1 shitty year and u come down with this disease.
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.
 

Boba

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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.

Do you happen to have a link to a study?

Studies show severe chronic emotional stress is common in the year prior to patients being hit with ME/CFS.
 

Learner1

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Well , thanks for the input, but I'd say definitely yes. What is the link between eds and cfs in your opinion.
Both Ron Davies and Whitney have it...the link is too strong a signal to be ignored. Check out the rccx theory. It might change your mind
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.
 

Oliver3

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Do you happen to have a link to a study?
Chronic emotional stress...most frequently found in those stress phenotypes.
That's what I keep telling you..everyone has an allostatic load. People with eds/ collagen problems are much less able to deal with stress. Often just the stress of standing becomes difficult.
But it's a phenotype . Naviaux has noted there's a PTSD / fibro phenotype.
These stress types are seen in the gifted and the mentally ill and across the eds spectrum