Is m.e. yet another form of EDS?

Oliver3

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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
 

hapl808

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What do you mean by officially diagnosed? Is this based on criteria (hypermobility, skin appearance, medical history) or based on exome testing or something else? My understanding was that EDS was still relatively poorly understood.
 

Oliver3

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What do you mean by officially diagnosed? Is this based on criteria (hypermobility, skin appearance, medical history) or based on exome testing or something else? My understanding was that EDS was still relatively poorly understood.
Are you aware of the RCCX theory..? All these illnesses have so much in common. Gastro, PTSD like symptoms, pots, pain issues...there's too much similarity for them to not be connected
 

Boba

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Are you aware of the RCCX theory..? All these illnesses have so much in common. Gastro, PTSD like symptoms, pots, pain issues...there's too much similarity for them to not be connected
This seems to fit with my history and disease development perfectly. High Stress Vulnerability, ADHD, abstract thinker. It runs in my family as well, father was a very talented musician with high stress vulnerability and psychological problems, my brother is highly stress vulnerable and we all have autoimmune diseases. I need to look for those mutations.
 

rel8ted

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What do you mean by officially diagnosed? Is this based on criteria (hypermobility, skin appearance, medical history) or based on exome testing or something else? My understanding was that EDS was still relatively poorly understood.
There is currently no gene marker for hEDS, but…. https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos

There is current research happening at Medical University of South Carolina. If you have a dx of EDS, you may contact them at the email on this page to participate.
https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab

It really isn’t so much that hEDS is poorly understood, it’s more that the medical community hasn’t cared. I was told by rheumatology that I had seronegative RA & put on meds. When I did some digging on my own & discovered I have EDS, she told me she figured it was that, but it’s not big deal. No big deal has turned out to be 2 neurosurgeries in 18 months (no, I am not comfortable giving specifics) and the possibility of needing a third in the near future.
I had a so-called ME specialist tell me that I was making too big a deal out of EDS because her kids probably have it and it can’t be that bad (summarized). That was the last time that clinic got any of my money.

On the other hand, my neurosurgeon is amazing, the PT I used after my 1st surgery was wonderful & my primary is supportive. It can BE understood if the doc WANTS to understand it.


Here is an informal interview with one of the researchers
 
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ruben

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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
Through my job as a taxi driver I know someone with EDS. I don't have any joint problems myself but we do both seem to have full blown IBS along with other M.E symptoms. Anyway this person has recently been having various investigations done in Cambridge UK. She has now I think she said been discharged and they can do nothing more for her, also saying her DNA is messed up.!!
 

Oliver3

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Are you saying that she has EDS? My understanding was that she came right out and said she does not.
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
 

Oliver3

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Are you saying that she has EDS? My understanding was that she came right out and said she does not.
Also if you read the second message, she concurs that there is much crossover.
I would really question her assertion there she doesn't have HEDS. There is no biological marker for it...just a physichal exam is not a forensic enough tool
 

Oliver3

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There is currently no gene marker for hEDS, but…. https://web.musc.edu/about/news-center/2021/07/14/musc-researchers-announce-gene-mutation-discovery-associated-with-eds-ehlers-danlos

There is current research happening at Medical University of South Carolina. If you have a dx of EDS, you may contact them at the email on this page to participate.
https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab

It really isn’t so much that hEDS is poorly understood, it’s more that the medical community hasn’t cared. I was told by rheumatology that I had seronegative RA & put on meds. When I did some digging on my own & discovered I have EDS, she told me she figured it was that, but it’s not big deal. No big deal has turned out to be 2 neurosurgeries in 18 months (no, I am not comfortable giving specifics) and the possibility of needing a third in the near future.
I had a so-called ME specialist tell me that I was making too big a deal out of EDS because her kids probably have it and it can’t be that bad (summarized). That was the last time that clinic got any of my money.

On the other hand, my neurosurgeon is amazing, the PT I used after my 1st surgery was wonderful & my primary is supportive. It can BE understood if the doc WANTS to understand it.


Here is an informal interview with one of the researchers
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...
 

rel8ted

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I would really question her assertion there she doesn't have HEDS.
I’m sure that @JenB would appreciate you questioning her assertion and insisting she has EDS even though she has publicly said she does not. Yes, she said there is overlap. I agree there is overlap. That does not make it the same.
 
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Oliver3

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I’m sure that @JenB would appreciate you questioning her assertion and insisting she has EDS even though she has publicly said she does not. Yes, she said there is overlap. I agree there is overlap. That does not make it the same. You can assert whatever you want, but that does not mean it is correct.
I'm saying it's an undiagnosed version of EDS..one that we don't know if yet. Perhaps an acquired eds.
Jen brea put that statement out into a public forum. So we can speculate all we want .
 
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Oliver3

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What is really interesting is that Ron Davis has EDS. Maybe some form of it was passed on to Whitney
There's no doubt about that in my mind.
What's interesting to me is Ron also had rheumatic fever as a child as did my mother. I would perhaps consider my mum to have eds like traits.
There some other link between virus and connective tissue too.
There's no doubt that these eds genes play a role in our illness to me.
Bad detoxifiers, don't do well with viruses, connective tissue problems etc etc.