hEDS and hypermobility spectrum disorder - ME/CFS Skeptic

[ME/CFS Skeptic]

A new blog post on the problems with hEDS and hypermobility spectrum disorder.
https://mecfsskeptic.com/heds-and-hypermobility-spectrum-disorder/

https://twitter.com/user/status/1846529061809496379


Epidemiological studies show no clear relationship between hypermobility and widespread pain. This questions the validity of diagnoses such as hypermobile spectrum disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS). Based on its prevalence, symptom presentation, female predominance, and lack of molecular basis, hEDS resembles fibromyalgia and ME/CFS more than other EDS types. The British Society of Paediatric and Adolescent Rheumatology expressed concern that ascribing symptoms to HSD/hEDS without evidence of connective tissue disease is unlikely to be helpful and may cause harm.

 

[ME/CFS Skeptic]

Twitter summary:

1) New blog post on hypermobile Ehlers-Danlos Syndrome (hEDS) and hypermobile spectrum disorder (HSD).
https://mecfsskeptic.com/heds-and-hypermobility-spectrum-disorder/

2) Epidemiological studies show no clear relationship between hypermobility and symptoms such as chronic widespread pain, which questions the validity of these diagnoses.

3) One Italian study for example reported that “no association was found between hypermobility and musculoskeletal pain. Hypermobile children did not experience functional limitations in daily activities, and they were slightly more active than non-hypermobile children.”
https://pubmed.ncbi.nlm.nih.gov/19465584/

4) A study in adults found that “there was no difference in the proportion of respondents who reported chronic joint pain across the three Beighton score categories."
https://pubmed.ncbi.nlm.nih.gov/31565567/

5) This 2012 review concluded: “There seems to be no association between hypermobility and joint pain in Europeans.”
https://pubmed.ncbi.nlm.nih.gov/22639794/

6) Admittedly, the literature is conflicting and limited, often focusing on children and the proportion that reports pain rather than pain intensity, but most studies report no clear relationship.

We have made a comprehensive overview in Table 1 in our article.

7) Studies in other illnesses often find no correlation between hypermobility and symptoms such as pain. One ME/CFS study concluded that “the clinical importance of generalized joint hypermobility is questionable”
https://pubmed.ncbi.nlm.nih.gov/16396727/

8) The hEDS diagnosis also includes 12 features suggestive of connective tissue disorder but many of these are subjective (soft skin, mild skin hyperextensibility) or non-specific (dental crowding, stretch marks, atrophic scars, etc).

9) Take, for example, the fat bumps on the heel (piezogenic papules). Two studies found that the vast majority (76%-80%) of the general population has them. We suspect that this is an error in the hEDS diagnostic criteria.
https://pubmed.ncbi.nlm.nih.gov/7623406/

10) It is also remarkable how the range of symptoms attributed to JHS/hEDS has increased over the years with some researchers claiming it forms an “occult underlying diagnosis” or “unifying concept for various functional somatic syndromes.”
https://pubmed.ncbi.nlm.nih.gov/22193218/

11) Another, perhaps more plausible explanation, is that researchers have inflated the hEDS diagnosis by including patients with unexplained symptoms and no clear indication of connective tissue disease.

12) Based on its symptom profile, prevalence, female predominance, and lack of molecular basis, hEDS looks more like fibromyalgia and ME/CFS than other EDS types.



13) Much like POTS, hEDS seems based on a speculative theory without robust evidence that is rarely questioned because it is masked as an already established diagnosis.

14) We sincerely hope that the connective tissue hypothesis pans out for at least a subgroup of patients with hEDS but also think it is important to critically assess the evidence and not put the cart before the horse.

 

[Robert 1973]

Another excellent blog @ME/CFS Skeptic.

I wish you could get versions of some of your blogs published in journals where they would be more widely read.

I also hope you may be able to publish them in a book one day.

 

[ME/CFS Skeptic]

Another excellent blog @ME/CFS Skeptic.

I wish you could get versions of some of your blogs published in journals where they would be more widely read.

I also hope you may be able to publish them in a book one day.

Thanks for the nice suggestions but I think that will be something for the future, perhaps if I have some more confidence on the topics I'm writing about.

The main goal now is to initiate debate about this in the online ME/CFS community (patients, advocates, clinician's and researchers) where my blog could act as an overview with handy references. I would be happy to hear counterarguments or interesting studies that I might have missed.

Unfortunately, it doesn't seem like it caught on or is instigating more discussion about the topic. Perhaps the blog articles are a bit too long and complex? Any suggestions or feedback about this are welcome.

 

[MrMagoo]

I think the name makes people think you’re sceptical of ME/CFS, more so than someone deconstructing the b*llocks around it and being skeptical of the bad advice and research pwME get.

 

[Hutan]

Thanks for the nice suggestions but I think that will be something for the future, perhaps if I have some more confidence on the topics I'm writing about.

The main goal now is to initiate debate about this in the online ME/CFS community (patients, advocates, clinician's and researchers) where my blog could act as an overview with handy references. I would be happy to hear counterarguments or interesting studies that I might have missed.

I think your blogs deserve to be published, and I think they would be most useful published, as then they would be better able to be cited and would get a higher profile. Maybe you could join Jonathan in Qeios?

 

[ME/CFS Skeptic]

I think the name makes people think you’re sceptical of ME/CFS, more so than someone deconstructing the b*llocks around it and being skeptical of the bad advice and research pwME get.

Thanks! Others have said so before but I'm still not sure if it is a big enough problem to change my online name and domain/hosting which would be a bit of a hassle. Perhaps I should do a poll or something like that to see what most people think how much of a barrier this is.

The initial idea behind the name and blog was that it should look neutral or professional, and focused on research, something people could share with doctors, researchers or even people who are skeptical about ME/CFS or who hold a BPS view. Recent posts about POTS and hEDS are more focused on the patient community so presumable in that context the name is less useful, as you say.

 

[MrMagoo]

Thanks! Others have said so before but I'm still not sure if it is a big enough problem to change my online name and domain/hosting which would be a bit of a hassle. Perhaps I should do a poll or something like that to see what most people think how much of a barrier this is.

The initial idea behind the name and blog was that it should look neutral or professional, and focused on research, something people could share with doctors, researchers or even people who are skeptical about ME/CFS or who hold a BPS view. Recent posts about POTS and hEDS are more focused on the patient community so presumable in that context the name is less useful, as you say.

I think maybe (not a SM or marketing expert though!) you need a “tag line” to hook people in and get patients discussing the blogs. Something like (and these are rubbish, just examples) “behind the headlines/behind the accepted wisdom/a deep dive into the research..” kind of thing.

I absolutely love them btw and I’m not at all knowledgeable about research or science.

 

[Hutan]

I've just read this latest blog. It's very well done. The quality of your work (you write them in a partnership I think?) is very good, better than most papers we see.

 

[EndME]

It's unfortunate that you feel like your blogs don't initiate quite that much discussion in the online ME/CFS community. I think of them very highly and my hunch is that most members on S4ME think similar. It might simply be that your content is often not suitable to create discussions on something like Twitter where it is usually more imporant to create a hype around nothing, rather than doing the opposite by debunking something trendy. The only thing that comes to mind is that perhaps the articles would be more read if they also contained short summaries, similar to how Cort writes summaries.

 

[ME/CFS Skeptic]

The only thing that comes to mind is that perhaps the articles would be more read if they also contained short summaries, similar to how Cort writes summaries.

Thanks, I was thinking about something similar, offer like a short summary version of the article at the top with bullet points so those interested could move on to the full article. Perhaps also infographics to make the main message/conclusion easier to share on social media but that might be a lot of work.

 

[Sean]

Others have said so before but I'm still not sure if it is a big enough problem to change my online name and domain/hosting which would be a bit of a hassle. Perhaps I should do a poll or something like that to see what most people think how much of a barrier this is.

I think it could be worth the effort.

That said, I would not be concerned with the size of your audience. Much more important is who they are. Doesn't matter if the audience is small, as long as it is the right people, the ones who can make a difference. I like to think more in terms of a node or nexus in a web. The size is less important than its location in the web.

Everybody knows who Einstein was. But how many know who Emmy Noether was, and her profound contributions to modern mathematical physics? Einstein thought very highly of her. But she is hardly a household name.

 

[Nightsong]

Yes, an excellent post; I too think very highly of them. You write really well. Hope you continue in the same vein - the history of "MCAS" would make for an interesting subject as well (the history is curious, dating back to the obscure German papers about a "monoclonal mast cell activation syndrome", but especially the deeply flawed thought found in Afrin's book which both re-conceptualised & popularised the diagnosis).

 

[EndME]

Thanks, I was thinking about something similar, offer like a short summary version of the article at the top with bullet points so those interested could move on to the full article. Perhaps also infographics to make the main message/conclusion easier to share on social media but that might be a lot of work.

Both sound like a good idea to me. Some form of infographics that can easily be shared seems very sensible as well.