Managing Patients With Hypermobility Disorders: They’ve Seen You, but Have You Seen Them?, 2026, Mintken et al.

[Evergreen]

But how would a patient know what's going on in the doctors circles and that hEDS (or whichever diagnosis) was the culprit?

Exactly. If you read S4ME regularly, then you'll know, but that's almost entirely based on one exceptionally well-informed member (JE). Outside of that, believing something you read on the internet over your own consultant is not generally to be recommended. And could have implications like reducing your credibility with your GP (righty or wrongly).

Even when you know a diagnosis makes others treat you poorly, as is often the case with ME/CFS, the reality is you need a label to get what you need.

 

[Utsikt]

So if it's an imaginary concept, as you say, then people who are currently ill or disabled with hEDS as their sole diagnosis would be better off getting reassessed by better doctors.

This is another major issue, and is similar to FND. If you get a diagnosis primarily based on rule in signs, then you have no idea about what they might have missed. People might have treatable conditions and just end up with quackery and continued suffering.

 

[Jonathan Edwards]

So if it's an imaginary concept, as you say, then people who are currently ill or disabled with hEDS as their sole diagnosis would be better off getting reassessed by better doctors.

They need to find an honest doctor who can tease out problems that might be addressable and explain what we otherwise know or mostly don't. I used to try my best at that but when practicing I was unaware of ME/CFS as a useful category with a documented natural history.

Things have to change, we all agree. How you educate a group of professionals whose official education channels are gummed up by people who prefer to return to shamanism is indeed a question that i do not now how to solve I have tried emailing the president of the British Society for Rheumatology. I have been told I am wrong by a president of the Royal College of Physicians and I have met considerable resistance from the advocacy groups I have become involved in. But I am not giving up.

 

[Chandelier]

But how would a patient know what's going on in the doctors circles and that hEDS (or whichever diagnosis) was the culprit?

Exactly. If you read S4ME regularly, then you'll know, but that's almost entirely based on one exceptionally well-informed member (JE).

This is another major issue, and is similar to FND.

Exactly, the patient is by definition sick and needs help.
It’s not in the job description of the patient to identify and navigate the psycho-social intricacies of the respective medical specialties.

A recent scary example of what happens when patients receive a fantasy diagnosis can be found here:

Post in thread 'FND Nope'

Friday at 4:11 PM

Written Off with FND: The Hidden Dental Abscess That Changed Everything

After years of severe disability and an FND diagnosis, Sam’s family discovered a large, hidden abscess beneath a previously treated root-canal tooth. Within weeks of its removal and treatment, he began to regain his vision, mobility, clarity and independence. This is their story and a reminder...

fndnope.org

Written Off with FND: The Hidden Dental Abscess That Changed Everything​

14 Aug 2026

Our "FND" story. It's long but needs to be told.
Above all if it can help anyone else get well. Please, please read to the end. For hope.

Aged 45, my previously healthy husband, Sam, started to get sick.

Headaches, chronic tiredness, dizziness, nausea, light and noise sensitivity, feeling drunk (but tea total), irritability, trouble concentrating, difficulty driving, trips and falls.

For 4 years, we begged his GP to take it seriously and do something...

• Chandelier

• 

 

[Evergreen]

when practicing I was unaware of ME/CFS as a useful category with a documented natural history

And having seen four rheumatologists, I think they were similarly unaware.

Perhaps that's the better tack - talk to rheumatologists about ME/CFS. If they recognise it more, start seeing it as something that isn't just a variant of FM or misdiagnosed FM, maybe fewer patients would be shunted down the hEDS route.

At the moment, they just see us as having fibromyalgia or being unnecessarily deconditioned. They see central sensitisation as causing everything we report - fatigue, OI, sensitivity to stimuli, the lot. And they see the solution as exercise plus or minus some drugs.

If you try to tell them not to use exercise with fibromyalgia, they will not listen to a word you say. But if you could start educating them about how people with ME/CFS respond to exercise, and why the evidence base is not what it seems, that could open the door to more conversations and the beginning of rheumatologists being less dangerous for us.

I got a real shock when I looked at a Cochrane review of exercise studies in fibromyalgia. The difference between the studies there and the studies in ME/CFS was stark - all the fibro studies were on classes of at least 45 minutes! Can you imagine that in ME/CFS? There'd be no-one at the second class.

 

[dave30th]

But I am not alone in having looked at the literature and found that the evidence is fairly strongly against any link - the paediatricians have been particularly concerned because giving a child a wrong diagnosis can be very harmful, especially if they end up with neck surgery they do not need.

Jo, are these criticisms published or written up anywhere?

 

[Jonathan Edwards]

And having seen four rheumatologists, I think they were similarly unaware.

Perhaps that's the better tack - talk to rheumatologists about ME/CFS. If they recognise it more, start seeing it as something that isn't just a variant of FM or misdiagnosed FM, maybe fewer patients would be shunted down the hEDS route.

I think they may have been dissimilarly unaware!

My unawareness was accompanied by extreme scepticism about all the beliefs of my colleagues about almost everything in rheumatology - from osteoarthritis to fibromyalgia. There is now a large body of rheumatologists that buy in to a dubious concept of fibromyalgia, together withHSD and likely hEDS. There are others who think hEDS is imaginary. Sadly more and more what I see is everyone bowing to the latest memes. The scientific revolution in rheumatology of the 1980s seems to have been buried by the old shamans.

But I think it would be a good tack to wave the DecodeME findings at every physician and point out that there is new evidence, hot off the press, of a specific genetic profile for ME/CFS, distinct from, but overlapping with, FM. (And none for hEDS that I know of.)

 

[Evergreen]

But I think it would be a good tack to wave the DecodeME findings at every physician and point out that there is new evidence, hot off the press, of a specific genetic profile for ME/CFS, distinct from, but overlapping with, FM. (And none for hEDS that I know of.)

Yes please.

And when they say "Why does it matter? We're going to treat them the same - exercise", you say "Ah, well, that's where one of the differences seems to be."

I think they may have been dissimilarly unaware!

My unawareness was accompanied by extreme scepticism about all the beliefs of my colleagues about almost everything in rheumatology - from osteoarthritis to fibromyalgia. There is now a large body of rheumatologists that buy in to a dubious concept of fibromyalgia, together withHSD and likely hEDS.

My sample of four suggests some have bought in a bit less than others, and might be open to being moved in another direction.

When it comes down to it, we're talking about professionals being too open to things with shaky evidence. So in theory, you could make ME/CFS the next thing they believe in.

I have found they get a bit excited about my dislocating/subluxating kneecaps, but for most I can dash their hopes quickly with my lack of bendiness. They also get excited about my OI, but again, I dash their hopes that it's not POT. However, out of 4, only one allowed their hopes about exercise to be dashed.

The intention behind all of it is trying to find something that could help. So framing it as, "For now, just don't exercise them, see if you can manage their pain better, and refer them to OT to see if any aids could help. Oh, and write letters when they need them so they don't end up in poverty." might appeal to that intention.