EDS, hypermobility, and the link, if any, to ME/CFS

[Jonathan Edwards]

Copied from this thread

Is your criticism here that hEDS-like symptoms following COVID-19 infection should not generate an hEDS diagnosis, or that hEDS does not exist, and therefore any such diagnosis is necessarily made by "a bunch of idiots"?

hEDS is a meaningless category that can cover anything between 20% and 0.0002% of the population. I don't know what hEDS-like symptoms would be, other than pain from joint subluxation. All forms of EDS are by definition monogenic and cases of pure hypermobile type with known monogenic defects or definite dominant pedigree are very rare. Otherwise you are dealing with people who are a bit more mobile and the evidence we have is that by and large they do not have any symptoms not found in stiffer people. Hypermobile-type EDS was originally defined as being restricted to hypermobility of joints so the opening statement mentioning multiple systems indicates just how muddled the thinking is.

 

[hallmarkOvME]

I don't know what hEDS-like symptoms would be.

Yes, pain, but not just from subluxations. hEDS symptoms have been consistently observed from skin hyperextesibility amd, most importantly, tissue fragility, the latter fully accountingfor most of the multi-systemicity, as connective tissue is whole organism wide.

 

[Jonathan Edwards]

Yes, pain, but not just from subluxations. hEDS symptoms have been consistently observed from skin hyperextesibility amd, most importantly, tissue fragility, the latter fully accountingfor most of the multi-systemicity, as connective tissue is whole organism wide.

Sorry, @hallmarkOvME, but on what basis do you make these authoritative-sounding statements? I have actually been involved directly or indirectly with hEDS for nearly 50 years. What I think was the first UK hypermobility clinic was set up by my supervisor and myself in 1978. I know all about this 'consistent observing' and nothing in all those years has led me to think it is other than make-believe. I have written about the only paper used to justify the idea that hEDS is systemic - the paper on mitral valve prolapse from around 1980. And I am happy to say publicly that as the person who collected the data, I do not think they showed what was written in the publication. It was a major learning exercise for me in how not to do clincial science.

I think if you want to defend these things as if you had detailed insight then I think you need to show what that detailed insight is. Do you have any professional expertise in the area? Are you familiar with the necessary methodology for avoiding bias? (Not to mention just fiddling the data.)

 

[hallmarkOvME]

Sorry, @hallmarkOvME, but on what basis do you make these authoritative-sounding statements? I have actually been involved directly or indirectly with hEDS for nearly 50 years. What I think was the first UK hypermobility clinic was set up by my supervisor and myself in 1978. I know all about this 'consistent observing' and nothing in all those years has led me to think it is other than make-believe. I have written about the only paper used to justify the idea that hEDS is systemic - the paper on mitral valve prolapse from around 1980. And I am happy to say publicly that as the person who collected the data, I do not think they showed what was written in the publication. It was a major learning exercise for me in how not to do clincial science.

I think if you want to defend these things as if you had detailed insight then I think you need to show what that detailed insight is. Do you have any professional expertise in the area? Are you familiar with the necessary methodology for avoiding bias? (Not to mention just fiddling the data.)

Are you aware of the symptoms of tissue fragility for EDS?

 

[Jonathan Edwards]

Are you aware of the symptoms of tissue fragility for EDS?

I am aware of the whole range of supposed signs and symptoms, including 'velvety skin' petechiae, striae, scars, psedotumours... We even had a machine to measure stretchiness using suction. Real EDS is often easy to diagnose from scars when the patient sits in the chair. It is rare. But make believe EDS is even easier to diagnose if you are an "hEDS physician" - on anyone and everyone. The signs and symptoms in the lists are useless.

Not a single person in our original clinic complained of fatigue as far as I remember. And I do not remember anyone complaining of pain beyond joints with recognisable pathology.

I realise that what I am saying may seen hard to believe. Why should doctors bullshit so much? The trouble is that have always done - biopsychosocial bullshit is the same, and the BPS people often like to throw in EDS as the bio bit. The bullshit started on the periphery around 1980. I saw it gradually become a fashion by 2000 and an industry by 2020. It is so easy, because if your imaginary disease has every possible symptoms then you can say everyone who has symptoms has it.

 

[hallmarkOvME]

I am aware of the whole range of supposed signs and symptoms, including 'velvety skin' [sic] petechiae, striae, scars, psedotumours... EDS is...easy to diagnose from scars when the patient sits in the chair....

The signs and symptoms in the lists....

These go to skin hyperextensibility signs and symptoms; I asked about connective tissue fragility--blood vessels, veins, abdominal organs, other organs, eyes, gums, bone, etc...--signs and symptoms.

The lists? We only go by one list.

Why after he sits in the chair?

Where do you draw the line between rare/not rare?

 

[hallmarkOvME]

Has anyone here vetted the EDS Society? Nothing came up in searches.

Home - The Ehlers Danlos Society

www.ehlers-danlos.com

 

[Jaybee00]

Scoma

“No wonder patients with Ehlers–Danlos syndrome are more prone to autonomic dysfunction, MCAS, long COVID, and ME/CFS. When collagen architecture is compromised, every system that relies on structural integrity breaks down.“

 

[Jonathan Edwards]

These go to skin hyperextensibility signs and symptoms; I asked about connective tissue fragility--blood vessels, veins, abdominal organs, other organs, eyes, gums, bone, etc...--signs and symptoms.

Hypermobile type EDS is defined as not having internal organ involvement. That is what the category means. (Which is why our paper on mitral valve prolapse made no sense.) And yet 'hEDS' is now defined as having whatever internal organ system involvement you like. The is typical of the complete muddle in the field.

The lists? We only go by one list.

But who are we? presumably the small group of physicians who like to generate a meaningless 'hEDS' list. Medicine has no need to grant authority to small fringe groups like this.

I asked before but I don't think I got an answer: do you have any professional expertise that means you included in this "we"?

 

[Jonathan Edwards]

Has anyone here vetted the EDS Society? Nothing came up in searches.

By vetted do you mean checked out?

I have checked that site out from time to time. It provides a mixture of valid information about the group of formal EDS conditions (monogenic) and a lot of misleading information about problems that are confused with EDS. Like a lot of advocacy organisation sites it is a very mixed bag.

 

[Yann04]

Hypermobile type EDS is defined as not having internal organ involvement.

Interesting.
I don’t want to give out personal medical info. So I’ll keep this anonymous.

But Person X who is close to me. They have hypermobility + lots of long term disabling symptoms. That in my opinion look quite like mild ME. Especially “PEM” type cycles (whenever they do too much they end up in bed with a migraine).

Anyways the local hospital diagnosed them with hEDS. That’s the diagnosis under which they have all their social support. I was a bit thinking this is probably misdiagnosed ME.

But they do have very elastic skin and more importantly they’ve had to had surgery multiple times because their organs keep on moving around (especially intestines) and it seems to be getting worse.

Which made me wonder if in this case that diagnosis might have some predictive value?

Edit: But I agree if all hEDS does is have predictive value for consequences of hyper mobility then it is failing at its purpose which is to unconvincingly bundle up hypermobility and disabling symptoms of unknown cause.

 

[Jonathan Edwards]

Which made me wonder if in this case that diagnosis might have some predictive value?

There may be people with more general tissue laxity whose problem allows prediction. However, tissue laxity is probably most usually a results of several out of maybe hundreds r thousands of genes that could have some effect. So the likelihood is that tissue laxity is such a heterogeneous problem that there are no useful predictions to make. Making predictions might even be harmful, if people get operations for 'laxity' when in fact that wasn't the problem. With individual cases one tends never to know.

At some point someone may identify several more specific types of laxity - like the Kallikrein15 story. But terms like hEDS just confuse things in the meantime.

 

[hallmarkOvME]

Hypermobile type EDS is defined as not having internal organ involvement.

Defined by whom? Almost everything underneath our our skin, starting with the extracellular matrix and including most of not all of our organs, is constructed with connective tissue.

But who are we? Presumably the small group of physicians who like to generate a meaningless 'hEDS' list. Medicine has no need to grant authority to small fringe groups like this.

"We" is Americans. (A door @Trish opened.) Why do you keep referring to numbers and epistemic location of groups in these contexts disparagingly? Why is the size of physician groups in these contexts so important to you? And so what if they're in the fringes? Science ought to be inclusive, democratic. The authority "granting" is, or I ought to be, a dialectical and mutually respecting discourse.

I asked before but I don't think I got an answer: do you have any professional expertise that means you included in this "we"?

We just met. It's too soon for that kind of self disclosure. For now suffice it to say that I'm a Citizen Scientist with a thirst for knowledge that my complex illness/es have fortunately left as a last vestige of my former selves.

 

[Jonathan Edwards]

Defined by whom?

The original EDS taxonomy from decades ago.

"We" is Americans.

Not really. It is a small group of people, most of whom may well be in America, pobably because that is where the most money is to be made out of such exercises. I remember being shocked at an academic meeting in the US where the chairman thanked the local city for its 'interest in business' - medicine obviously being business.

Why do you keep referring to numbers and epistemic location of groups in these contexts dosparagingly?

You seemed to be trying to argue that there was some sort of consensus. There isn't. Presumably international consensus is of relevance, unless of course you think that only American opinions matter.
I am disparaging because the academic output from this group is abysmally bad in terms of methodology and analysis.

And so what if they're in the fringes? Science ought to inclusive, democratic. The authority "granting" is, or I ought to be,.a dialectical and mutually respecting discourse.

Science is inclusive, it certainly is here. "Fringes" does not just mean a small group. It means a small group whose idea the rest of us have coondisered and not thought much of. Yes, the authority comes from discourse. But if you dismiss what the other guy says as due to some quirk of philosophical position and fail to answer basic questions about what concepts are supposed to consist of things tend to grind to a halt. Respect can be earned, or squandered. Scientists have no reason to 'respect' a theory that is clearly full of holes.