• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is m.e. yet another form of EDS?

O

Oliver3

Senior Member
Messages
925
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
 
H

hapl808

Senior Member
Messages
2,299
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.
 
O

Oliver3

Senior Member
Messages
925
hapl808 said:
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.
Click to expand...
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

Boba

Senior Member
Messages
332
Oliver3 said:
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
Click to expand...
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

rel8ted

Senior Member
Messages
451
Location
Usa
hapl808 said:
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.
Click to expand...
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
 
Last edited:
R

ruben

Senior Member
Messages
317
Oliver3 said:
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
Click to expand...
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.!!
 
O

Oliver3

Senior Member
Messages
925
rel8ted said:
Are you saying that she has EDS? My understanding was that she came right out and said she does not.
https://twitter.com/i/web/status/1035996271385792512
Click to expand...
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
 
O

Oliver3

Senior Member
Messages
925
rel8ted said:
Are you saying that she has EDS? My understanding was that she came right out and said she does not.
https://twitter.com/i/web/status/1035996271385792512
Click to expand...
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
 
O

Oliver3

Senior Member
Messages
925
rel8ted said:
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
Click to expand...
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...
 
O

Oliver3

Senior Member
Messages
925
rel8ted said:
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.
Click to expand...
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 .
 
Last edited by a moderator:
O

Oliver3

Senior Member
Messages
925
bctjr1993 said:
What is really interesting is that Ron Davis has EDS. Maybe some form of it was passed on to Whitney
Click to expand...
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.
 
You must log in or register to reply here.
Back