Is m.e. yet another form of EDS?

Aidan Walsh

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Yet another person I know, who was certain they had m.e. has now being officially diagnosed with Ehlers Danlos Syndrome.
Another good friend I went to school with has HEDS. His symptoms are identical to mine except he is hypermobile.
There have been lots of new variations of EDS discovered over the last decade.
Are we just looking at fibro/ m.e. even Lyme's disease being an as yet undiagnosed expression of ehlers danlos syndrome
Countless with ME/CFS have EDS types & the majority of ME/CFS have not been seen by EDS Doctors...I have said countless times what is ME/CFS Lyme EDS they are all names, labels & I am also seeing many now also being told they have porphyria types...

EDS genetic panels are rarely done & the same goes for porphyria as well...One will also see countless assume they have mold yet there is no proof mold is any cause of ME/CFS Lyme EDS. Ehlers Danlos was named after 2 Doctors.

There is a newer type criteria called HSD Hypermobility Spectrum Disorder...EDS 3 & HSD have no genetic tests. Stiff Person Syndrome is another illness being found in many with a diagnosis of ME/CFS...What is ME/CFS??? Another label name
 

Aidan Walsh

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I'm saying really that ehlers danlos is a very poorly understood disease. They keep adding new forms of it.
Even tho Jen brea may think she doesn't have it, she did have ligament damage akin to eds...
We just don't know yet what this is.
So many people with m.e. have neck issues.
So many have crossovers with eds like POTS, irritable bowel, reflux, brain fog, orthastic intolerance, poor connective tissue. PTSD symptoms etc etc.
Ron Davies himself has EDS. It runs in clusters. Indeed, there seems to be a genetic attraction.
So I would be circumspect about Jen's proclamations. The science is not certain of eds at all.
The beighton scale is s pretty poor way of discerning EDS. There needs to be a lot more research into eds and connective tissue on general
Does she say she does not have EDS? Has she had the full panel genetics on EDS even the Tenascin X test & VEDS4 Vascular EDS done?

She could still fit the criteria with HSD Hypermobility Spectrum Disorder...It is likely that Ehlers Danlos came about from these 2 Doctors evaluating ME/CFS patients & putting Label Names on them.

I do recall Jen saying years back she had EDS but that changed when one Doctor said she did not have EDS I believe she does have it...
 
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Aidan Walsh

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I think you're dancing on a pin head to disagree mate. The medical community don't want to know. These are " female" diseases therefore garner little interest.
Science can turn it's hand to anything. They just don't.
I stand by my thoughts that m.e. is a form of EDS...
Same illnesses, different label names, let's call it Lymies or Warriors all the same illnesses
 
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Oliver3

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Countless with ME/CFS have EDS types & the majority of ME/CFS have not been seen by EDS Doctors...I have said countless times what is ME/CFS Lyme EDS they are all names, labels & I am also seeing many now also being told they have porphyria types...

EDS genetic panels are rarely done & the same goes for porphyria as well...One will also see countless assume they have mold yet there is no proof mold is any cause of ME/CFS Lyme EDS. Ehlers Danlos was named after 2 Doctors.

There is a newer type criteria called HSD Hypermobility Spectrum Disorder...EDS 3 & HSD have no genetic tests. Stiff Person Syndrome is another illness being found in many with a diagnosis of ME/CFS...What is ME/CFS??? Another label name
You've said it better than me.
Hey at least ehlers and danlos were pretty open minded and obsrvant eh?
Fibro, Lyme's et Al..they're all expressions as you say of a phenotype...just like Asperger's ADHD, cluster b personality disorders all share some of the same genetics and symptoms.
I think eds , or whatever we are gonna call it , is gonna be part of many illnesses , including whatever we wanna call vascular ageing in the long run.
I follow a cardiologist who is using fasting to reverse insulin resistance. He says those with connective tissue disorder need to hit his protocols harder to get the same results as their tissue gets injured more easily.
When we are looking at such a base building block as collagen and connective tissue, and perhaps other things we don't know about yet that come along with eds and connective tissue strength) integrity's/ type, it stands to reason that if this " cement" is not as strong, the house is gonna get battered more easily
 

Oliver3

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Well, it's a nice idea, but reality in medicine is often more complicated than what us humans as pattern-seeking creatures like to think. For example all cancer was once thought to be more or less the same disease and respond to similar treatments, but the deeper we dig, the more complicated the picture gets.

I don't see how EDS can be at root cause of what I have. I developed POTS issues almost overnight long ago. After that my POTS has also been gone for long periods of time only to re-appear later in life. I fully recover from my symptoms whenever I get the cold. There is nothing I can at least subjectively feel wrong when I had those moments of full recovery, so there is no permanent damage from EDS at least in my case. If it was all EDS genes at play, ME/CFS should behave more predictably in my view and we shouldn't be seeing any recoveries.

I guess it could still be that EDS is somehow as an underlying factor making me more susceptible to for example viruses, like @Hip mentioned. But I have serious doubts there is any EDS-related treatment breakthrough going to happen for ME/CFS patients during my lifetime. If I'm more susceptible to viruses and autoimmunity due to EDS, then I'm almost certain it would be easier to develop treatments targeting those viruses than gene therapy or something that directly treats effects of EDS.
Whilst of course it's only my gut feeling. Gut is an obvious point here.
Neurally mediated pots is likely stuff crossing a " leaky" blood brain barrier. Again less cell wall strength. Autoimmunity is often or maybe even always from lack of cell wall integrity in the gut (eds) creating molecular mimicry, then autoimmunity.
Trust me, I don't want eds to be true, cos then we are looking at CRISPR and stem cells.
Of course we may be able to treat autoimmunity better too. I heard Whitney suggesting is dad may have found a "switch" for autoimmunity.
But heavy metals accumulate in the brains of autistic people..they have tissue issues too... I mean you could go on and on.
Yes viruses may be at play, but only because the eds problem is there.
Yes, great, let's treat the virus...you know like with HIV or whatever. Lead a normal life.
But the underlying problem is connective tissue.
As long as they invent a med that helps I'm not bothered. I just worry that the scientists are stuck in the " this must be a virus" etc whilst not looking at the fertile ground stuff like ebv reactivates into
 

Aidan Walsh

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You've said it better than me.
Hey at least ehlers and danlos were pretty open minded and obsrvant eh?
Fibro, Lyme's et Al..they're all expressions as you say of a phenotype...just like Asperger's ADHD, cluster b personality disorders all share some of the same genetics and symptoms.
I think eds , or whatever we are gonna call it , is gonna be part of many illnesses , including whatever we wanna call vascular ageing in the long run.
I follow a cardiologist who is using fasting to reverse insulin resistance. He says those with connective tissue disorder need to hit his protocols harder to get the same results as their tissue gets injured more easily.
When we are looking at such a base building block as collagen and connective tissue, and perhaps other things we don't know about yet that come along with eds and connective tissue strength) integrity's/ type, it stands to reason that if this " cement" is not as strong, the house is gonna get battered more easily
What is Asper's or Autism they are likely more forms of ME/CFS EDS Lyme I even see them on porphyria types, imagine some are Allergic to the Sun types, yet these Doctors or Quacks dismiss so many patients I honestly feel Lawsuits should be filed, even better sue from the Private side filing Commercial Liens seize their Ass_ets
 

Aidan Walsh

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Now we have the Alpha-Gal Meat Allergy & the blood test is not 100% accurate & Allergist skin testing is better for all mammal products involved beef pork lamb dairy. Ever sugar has alpha-gal from bone-char processing, most toothpaste has mammal ingredients & countless products meds, vitamins minerals even damn lipstick. Now we have the Charlatans for profits looking for HSV-1 cause :) Hillary-arious madness
 

Aidan Walsh

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I'm heterozygous for some EDS gene. I'm generally confused about the genetic part of all this.

I wish I could find an actual expert on the neck. To tell me if my head is in fact going to fall off, one day.
Eagle Syndrome is also involved as well aside from Chiari in some tethered spinal cords, CCI, Stenosis, spinal fluid leaks the list is so very long & not forgetting HFI hereditary fructose intolerance another genetic born illness
 

Aidan Walsh

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The warriors disease....yes!
Wanted to also say not having Hypermobility EDS Joints is not the way to go in EDS, we still have to look to see if one has the Vascular type or Tenascin X or other types & also Porphyria types goes with autonomic dysfunction including Neuropathies...

9 types of porphyria about 4 types are Allergic to the Sun & UV Lights, 4 are Acute types the others are Cutaneous types, I am Negative on stool testing thus far for Variegate & Coproporphyria Sun types there are still 7 types to test.

One is so rare the ADP only 10 people are known thus far to have this type so that can be eliminated. Invitae does the full 9 panel DNA for $350.00 a Doctor needs to sign the forms out & it takes about 14 to 21 days for the results to be completed. DNA Swab or Saliva or Blood is accepted...

I would not send all credit card details in the Mail, save the Code at back & let them know by phone once it arrives otherwise your card details could be stolen in the Mail...Use a tracking in the Mail that way you know it is there then email or call them with your code
 

lenora

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Gosh.....we can't lay everything on the altar of CFS/ME/FM/EDS, ADHD, etc. We're human beings, things occur.

My oldest daughter had severe ADHD. It wasn't caused by EDS but major oxygen deprivation at birth. She was a very large baby, a difficult birth and she spent a no. of days in the preemie nursery b/c she would stop breathing.

It's going to be years upon years before science can confirm why we have so many of these problems. In many cases yes, it does go back to connective tissue, but in others who knows?

I also had a brother who had rheumatic fever from a strep throat that wasn't treated early enough. Sometimes things just happen. Wishing everyone well....Yours, Lenora.
 

Oliver3

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Gosh.....we can't lay everything on the altar of CFS/ME/FM/EDS, ADHD, etc. We're human beings, things occur.

My oldest daughter had severe ADHD. It wasn't caused by EDS but major oxygen deprivation at birth. She was a very large baby, a difficult birth and she spent a no. of days in the preemie nursery b/c she would stop breathing.

It's going to be years upon years before science can confirm why we have so many of these problems. In many cases yes, it does go back to connective tissue, but in others who knows?

I also had a brother who had rheumatic fever from a strep throat that wasn't treated early enough. Sometimes things just happen. Wishing everyone well....Yours, Lenora.
Things just happen. No there's always a reason. I'm not saying EVERY case of "m.e" is EDS.
But the vast majority, like 99th percentile are, viruses seem to have a way easier time in eds type people. Nothing is just for some reason. In my opinion
 

Hip

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I'm not saying EVERY case of "m.e" is EDS.
But the vast majority, like 99th percentile are
The Bragée study on CCI in ME/CFS patients report that 20% of patients meet the hEDS criteria:
A diagnosis of hEDS was present in 20% of our study population, and the prevalence in the general population is <1%.

Such an overrepresentation of connective tissue disorders, such as hEDS, has, to the best of our knowledge, not been previously described in a large adult ME/CFS cohort.
This is interesting, but nowhere near your figure of 99% (where did you get that 99% figure?)



The study also found that hypermobility was common in ME/CFS:
Hypermobility was identified in 115 (50%) participants.
But hypermobility may also be due to an infectious process, as infections can weaken connective tissue, due to the connective tissue degrading enzymes like MMP-9 they can release. This study for example shows how Bartonella infection resulted in joint hypermobility mimicking Ehlers–Danlos Syndrome.

So ME/CFS patients with joint hypermobility may not have hEDS. They may just have an infectious process which weakens connective tissue.

Ehlers-Danlos syndrome is a genetic condition, which is reflected in SNPs.

When I caught the virus which triggered my ME/CFS, coxsackievirus B4, it rapidly started causing periodontal disease (receding gum line), which relates to connective tissue. But prior to the virus, my gums were in excellent health. So this shows how infections can weaken connective tissue.
 

Hip

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From the treatment perspective, it would be a good idea to investigate why hEDS may predispose to ME/CFS.

If there are identifiable factors in hEDS that are playing causal role in triggering or maintaining ME/CFS, then it may be possible to target those factors for treatment, which then could help the hEDS subset of ME/CFS patients.

For example, in the article I mentioned earlier, those with hEDS tend to have an IgG-3 deficiency, and ME/CFS patients with this immune defect can benefit from IVIG (you can search this forum for details on patients with IgG subclass deficiency).
 

Oliver3

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The Bragée study on CCI in ME/CFS patients report that 20% of patients meet the hEDS criteria:


This is interesting, but nowhere near your figure of 99% (where did you get that 99% figure?)



The study also found that hypermobility was common in ME/CFS:


But hypermobility may also be due to an infectious process, as infections can weaken connective tissue, due to the connective tissue degrading enzymes like MMP-9 they can release. This study for example shows how Bartonella infection resulted in joint hypermobility mimicking Ehlers–Danlos Syndrome.

So ME/CFS patients with joint hypermobility may not have hEDS. They may just have an infectious process which weakens connective tissue.

Ehlers-Danlos syndrome is a genetic condition, which is reflected in SNPs.

When I caught the virus which triggered my ME/CFS, coxsackievirus B4, it rapidly started causing periodontal disease (receding gum line), which relates to connective tissue. But prior to the virus, my gums were in excellent health. So this shows how infections can weaken connective tissue.
I think there is a mechanism we don't understand. Obviously viruses can cause all sorts of havoc in the body..cancers etc but you may say you were fine before, but I'd suggest it was going to happen.
Im not trying tobe provocative.
I know people withhiv can have collagen loss etc
But mix a virus with eds and things don't go well..yes perhaps your gums were fine, but the allostatic load of a new virus was the pivot point with which your body could not handle.
I think everyone, eds or not has these break points. Obviously, with eds like illnesses these breaking points happen much earlier.
So you may be mistaking the onset of a new virus as ground zero, when in fact, it unmarked other viruses or cascades in the body that you couldn't handle.
I do know they say there is an acquired form of eds.
I'm dubious of that for most. I think the blue print for illness was there at birth, and however strong your connective tissue is, is when the breaking point is.
I know you may say it's reductionist, but strength of immune system seems directly correlated to immune strength.
Of course there will always be anamolies but I think it's the general pattern
 

Oliver3

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From the treatment perspective, it would be a good idea to investigate why hEDS may predispose to ME/CFS.

If there are identifiable factors in hEDS that are playing causal role in triggering or maintaining ME/CFS, then it may be possible to target those factors for treatment, which then could help the hEDS subset of ME/CFS patients.

For example, in the article I mentioned earlier, those with hEDS tend to have an IgG-3 deficiency, and ME/CFS patients with this immune defect can benefit from IVIG (you can search this forum for details on patients with IgG subclass deficiency).
You mention the study...we are on shifting sands of understanding. I think medicine has hitherto seen eds as a fairly rare phenomena. I think it's really common apnd there are yet to be a shed loads of unconnected diseases attached to it.
Obviously, this is gut feeling stuff, but I want them to open the box on this cos the sooner it's faced the sooner it can be dismissed.
There seems to be inflexible thinking as to what eds is...it's certainly not a done deal, no one has had billions to research eds so I kinda think we are in the foothills of pa proper understanding
 

Oliver3

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I think there is a mechanism we don't understand. Obviously viruses can cause all sorts of havoc in the body..cancers etc but you may say you were fine before, but I'd suggest it was going to happen.
Im not trying tobe provocative.
I know people withhiv can have collagen loss etc
But mix a virus with eds and things don't go well..yes perhaps your gums were fine, but the allostatic load of a new virus was the pivot point with which your body could not handle.
I think everyone, eds or not has these break points. Obviously, with eds like illnesses these breaking points happen much earlier.
So you may be mistaking the onset of a new virus as ground zero, when in fact, it unmarked other viruses or cascades in the body that you couldn't handle.
I do know they say there is an acquired form of eds.
I'm dubious of that for most. I think the blue print for illness was there at birth, and however strong your connective tissue is, is when the breaking point is.
I know you may say it's reductionist, but strength of immune system seems directly correlated to immune strength.
Of course there will always be anamolies but I think it's the general pattern
Immune strength related to connective tissue strength I meant