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

I think I have probably said enough about why I do not think hEDS is a meaningful label. Rather than being an ostrich, I have come to this conclusion afresh having worked alongside people who believe in hEDS for 40 years. There are lots of hypermobile people but they do not have any single Mendelian dominant genetic condition so there is no value in calling them hEDS.

I am sure that physicians who are enthusiasts for hEDS seem kind. but that has nothing to do with quality as a researcher does it? There is no research of any value relating hEDS to ME or POTS that I am aware of. I have looked and all I come across is anecdote from clinics that collect people that fit the physician's chosen beliefs.

I am sure there are people with hypermobility who have ME symptoms, just as people without hypermobility have ME symptoms. The only valid studies I have seen suggest no particular link between the two.

 

@arina83
Thank you for the link to the HEDGE study. I look forward to the finding of a genetic marker for hEDS so that there can be no disputing the diagnosis. It is a serious condition which affects many body systems and is only recently beginning to get the medical attention it deserves.

 

https://twitter.com/user/status/1339916930505961474

 

here we go . . .

 

Moved from this thread: Beyond Bones - relevance of variants of connective tissue (Hypermobility) to Fibromyalgia, ME/CFS - Eccles et al Feb 2020
_______________

https://www.rcgp.org.uk/clinical-an...-ehlers-danlos-syndromes-toolkit-for-gps.aspx

I have heard rumours that this may be with drawn?!
Also there was a recent conference where it appears patient observers feel that the "rehab/BPS approach' is 'infecting' EDS approaches and classification and that ,

"..BSR and rehab folk for the EDS international suggesting that hEDS and HSD are FND's ..."

Lots of funding splashing about in UK for FND and IAPT.........and CCGs and clinical executives LOVE it!

https://www.ehlers-danlos.com/pediatric-concerns-in-eds.../?

ehlers-danlos.com
Pediatric Concerns in EDS and HSD: Exploring The Impact of Misdiagnosis | The Ehlers Danlos Society

 

Medicine is way too political. Just a bunch of people being outraged that reality disagrees with their beliefs is enough to create a false controversy. What a dysfunctional mess.

If they want better evidence then it should be built. This is a tantrum.

 

I sincerely hope so, it is largely disinformation.

Which was a tantrum?

 

Taking the toolkit down using obviously nonsensical justifications. I understand it's controversial for some but this is a broken process shrouded in secrecy. It should be built upon, not thrown away as an hissy fit. I will defer to the medical professionals with EDS who were involved in this since many find it useful, which is a whole lot more than the alternative of damn MUS crap.

 

Why are the justifications nonsensical? The justification is that the toolkit contains a lot of unfounded, misleading and potentially harmful information. The reasons I have written about quite a lot here. Nothing is shrouded in secrecy. A number of paediatricians have publicly pointed out the problems - actually in a formal publication and in a public letter if I remember rightly. Everything is absolutely in the open. There is no point in building on a bundle of myths generated by people like Rodney Grahame and Alan Hakim.

There is no 'alternative' situation here. Pointing out that the category of 'hEDS' is unfounded and unhelpful has nothing to do with supporting a BPS approach. Remember that one of the main drivers of this EDS myth is Hans Knoop, a central figure in the BPS brigade. 'EDS' is the bio part of the biosychosocial story. I remember Peter White quoting it as such in his presentation on PACE at CMRC in 2014. We now have Jessica Eccles concocting a total mishmash upside down version of bendy BPS.

The key reason for removing the toolkit is that it encourages parents to think that their children may need special treatments from fringe private practitioners for their children with 'EDS' including things like spinal surgery. The diagnosis sets up a wall between anyone medical trying to provide sensible support and the family. No doubt there are health care workers with muddled ideas about exercise contributing to the problem but an inappropriate diagnosis of EDS can only make the situation ten times worse.

The frightening thing is that so many physicians, including those who are normally considered to have a positive approach to ME have got sucked into the EDS, mast cell activation, spinal disease, and so on, myth.

 

I don't know enough about EDS to judge any of this. All I know is that advocates, including physicians, find it a useful description. If it contains advice for dangerous surgery than that sounds like an easy fix that obviously should not have been there in the first place. If it means editing 90% of it then so be it.

But this does leave this patient population to the BPS/MUS, we know this is how it works. But whatever the BPS folks use to promote their point is not really an issue, they will grasp at any straws. They even love to use pieces of evidence like imaging, twisting them to show how powerful the mind is. Their arguments are meaningless, they don't mean what they say or say what they mean.

 

Yes, but advocates like Henrik Vogt find LP useful. The whole point of discussing this stuff is sort the reality from the illusion. As I have said many times, I know the people who set this EDS myth in train intimately as departmental colleagues and I know that it is based on nothing other than what they would like to believe.

It is 100% an inappropriate way of looking at things. There is no meaningful evidence that 'EDS' is in any way linked to ME as far as I am aware. The belief in an association is an artefact of tertiary referral to rheumatologists of people with problems that nobody can fully explain. There is no 'balance' to be had if something is just plain groundless.

But as I have pointed out it is the opposite. The BPS people are the same people as the EDS people just wearing different suits. EDS physicians tend to wear smart suits and ties. BPS psychiatrists tend to wear sloppy jackets and teeshirts. But if you could peer into their minds I suspect you will find much the same thoughts. In a way the BPS people are the more honest I suspect.

The EDS story is mainstream BPS. Peter White will have loved telling patients that part of their problem is their hypermobility. I know these people. I have worked in a department with half a dozen of them. Everything is multifactorial - a bit of infection, a bit of EDS, a bit of family dynamics and a good dose of 'getting into disability mode'. But its all multifactorial bullshit. The reality is that we have no idea why the members here are ill and I am not. False explanations are not the answer regardless of whether or not they sound more or less the way we might like them to sound.

 

Thank you.

I've noticed that you support the genome-wide association study (GWAS) i.e. since it may be a way to understand the underlying cause of ME. Chris Ponting's has received NIHR, & MRC, funding for an ME GWAS.
I think you mentioned that there were some other interesting (NIHR?) applications re activity monitoring - details? @Michiel Tack Activity monitoring seems interesting since it would objectively monitor improvement/outcomes - PACE authors wouldn't have been able to claim success!

You also mentioned T-cell studies, GWAS might give some clues re involvement of the immune system; however, I don't think there's a specific hypothesis.

To me there are things to be tested/done i.e. to try to understand ME & get back to a healthier/more normal life. From the outside, knowing even less about EDS than I do about ME, I reckon there are options to better understand EDS.

 

I am not aware of any applications re activity monitoring. The MRC research project came about in a rather strange way. Advisors were asked to indicate which avenues they thought worth pursuing, prior to any application. Having advised that GWAS was the one thing that looked worthwhile and had some people with the right expertise ready to apply that was what got applied for.

 

Partial memory! Thank you; here's the quote I was thinking of:
"When I [ @Jonathan Edwards ] acted as MRC advisor this recent time around the GWAS project was the one thing that looked worthwhile, apart from maybe some actimetry studies."
https://www.s4me.info/threads/georg...dian-article-21-1-21.18562/page-4#post-319043

I was interested in what type of actimetry studies seem interesting.

@Michiel Tack

 

I really haven't followed this @rvallee but I came across this on the web* - sort of illustrates the problems the EDS folks are up against. I.e. academic system needs funding (your research group doesn't bring in funding then it will be wound up) and the Government needs cheap, and popular, answers.

*"12 September 2017

The Department’s National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis (ME); it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity. Currently, the NIHR is funding one project on ME; a large randomised controlled trial of an internet-based cognitive behavioural therapy for children aged 11-17 years. It is being led by Professor Esther Crawley at Bristol University and is funded for £994,430. It began in May 2016 and further information on this, and all NIHR funded projects, can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/summary-of-research(opens in a new tab)

Answered by
Department of Health and Social
https://questions-statements.parliament.uk/written-questions/detail/2017-09-04/7182"

Who did that research benefit -- oh apart from the salaries it paid for & the university & the fact that the Government could justify it's policy ---

 

I do see some of that, for example the EDS society, and most patient advocates strongly dislike them and would rather they go away. They seem to be like Action4ME was around the time of the BPS takeover and their support of PACE. So some BPSers have taken this in their own favor, did something similar to inventing FND. That's bad but I don't think that's a valid reason to dismiss the whole thing. It's similar to us, interlopers sabotaging things and ruining things for everyone simply by being able to abuse their influence far above what the patient community can do.

Ugh. Anyway this is politics, especially with the BPS fanatics it's always damn politics and thoughts and beliefs, their own. But in such matters one lesson I've learned in the last few years is that when in doubt, trust the patient advocates. We are not 100% right but at least we are on the right continent and the same general coordinates, rather than out there in the ith dimension of fantasyland.

 

The reason for dismissing the whole thing of hEDS is that it doesn't actually make any scientific sense - not even any common sense sense, if you look at it hard.

Patient advocates are often right but when they are advocating stuff made up by fringe physicians that they think sounds good but is bullshit they may be well into the dimension of fairyland.

 

According to the article, she was first diagnosed with ME/CFS but then later she found out that was a misdiagnosis and she actually had Ehlers-Danlos:

Woman who would drop to the floor without warning waited three decades for a diagnosis

https://www.walesonline.co.uk/news/uk-news/woman-who-would-drop-floor-20104681

 

According to the article, yes, but there is nothing in the article to suggest that this is a meaningful interpretation. A small group of physicians are diagnosing EDS in thousands of people on the basis of nothing very abnormal. Thin or stretchy skin and gut issues do not amount to EDS.

 

Yea it would be interesting to do a blind trial of Doctors - same bunch of patients and different Doctors. The EDS Doctors would find EDS in more cases and the ME Doctors would find ME in more patients.

What patients really need is a push to understand the disease not a label that doesn't help towards a meaningful improvement in health.