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

DigitalDrifter said:
What if a hEDS diagnosis could save a patient from psychogenic attribution, wouldn't it be worth it then even if it's a white lie?
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Why would save patient from a psychogenic attribution? The alternative to diagnosing hEDS is to tell the patient that they have ME or whatever is the most appropriate diagnosis and say that we recognise it as a disabling biomedical condition but do not understand it.

I also think there may be a misconception here. hEDS IS a psychogenic attribution for most of the doctors that use the term. They know very well that it sells well to gullible people (who they think don't have much wrong). It is most popular with doctors who like the BPS type explanation that explains everything whatever way you like. The white lie is the BPS tactic.

The whole thing is not what it seems. And I say that as someone involved in the first UK hypermobility research clinic (as far as I know) and as somone who was asked to take back charge of that clinic twenty five years later by a BPS colleague who thought it was a good earner for the department.
 
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Jonathan Edwards said:
The alternative to diagnosing hEDS is to tell the patient that they have ME or whatever is the most appropriate diagnosis and say that we recognise it as a disabling biomedical condition but do not understand it.
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What percentage of medical professionals do you think actually believe ME to be a disabling biomedical condition? If it's high then I have some bad news for you.
 
DigitalDrifter said:
What percentage of medical professionals do you think actually believe ME to be a disabling biomedical condition? If it's high then I have some bad news for you.
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I am not particularly interested in other medical professionals. I am interested in an honest dialogue with my patients (or was). If the issue is a financial one and people want a diagnosis that gets them financial support then I would respect and act on that but debasing currency using terms like hEDS gets us nowhere. What proportion of medical professionals do you think actually believe hEDS to be a disabling condition? Hardly any. They know it as a code for ME.
 
I found a link to the Norris lab where the work is being done. It describes the work in more detail.

https://medicine.musc.edu/departments/regenerative-medicine/research/norris-lab.

Above link describes the lab as working on Ehlers Danlos-h and also aortic and mitral valve heart issues.

When I was diagnosed 2 years ago with hEDS, the genetics Professor used my diagnosis of mitral valve regurgitation as one of the characteristics of hEDS. In the absence of a genetic marker, there seems to be a list of features that are used as diagnostic markers: another was a high arch to the roof of the mouth and also early onset osteoarthritis.

IF a genetic marker has been found, it will be useful in hEDS but also other conditions like lipoedema because it is postulated that there is a genetic link between hEDS and lipoedema. St. George's Hospital is doing research on this- they have a blood sample from me stored for use.

We have a thread somewhere on lipoedema. eta:https://www.s4me.info/threads/lipomas-dercums-adiposa-dolorosa.16010/
 
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https://www.theguardian.com/society...g-the-treatment-of-her-rare-genetic-condition

This does not help anyone as far as I can see.

OK, the BPS roadshow is a disaster but so is this.

I noted this paragraph:
It is also not insignificant that EDS is a condition more likely to affect women, who have been historically underserved in healthcare. Zingman remembers, as a trainee, the women who would come in with multiple joint complaints and were also very flexible. She would hear senior doctors describe them as a “floppy female”.

Yet EDS is either dominant or sex-linked recessive (almost entire male). It does not favour women. Women are normally more mobile than men, presumably for good reason, that's all.

I did not read it all but it seems this doctor has invented her own treatment too - presumably without even an unblinded trial with subjective outcomes.

This to me is more than anything what gives PWME bad press. Her illness is not all in her head but 'hEDS' as a diagnosis is all in the head.

I may annoy people by going on about this but ...
 
strategist said:
That seems hard to reconcile with "in their head".
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The point I want to make is that people like this are clearly suffering but the label hEDS is made up by doctors who don't understand what they are doing.

Whether or not people's joints actually dislocate doing ordinary things is always difficult to know. That they have a problem I accept, but I am sceptical that being 'out of position' is necessarily a useful explanation much of the time.
 
strategist said:
They also often have a disabling multi symptom syndrome. If "hEDS" is a bad narrative for what is going on then what is a good narrative?
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I think Dr Nath's NIH study of people with ME/CFS might provide a template to try to understand the illness(s) people with the hEDS label actually have. Or possibly try GWAS ---- I think the problem is that there's a rather pointless discussion about labels when the energy should be expended in clinicians/researchers trying to understanding the illness. The latter (clinicians/researchers) costs money and effort --- so I guess that's one of the reasons discussion is selected.
 
strategist said:
They also often have a disabling multi symptom syndrome. If "hEDS" is a bad narrative for what is going on, then what is a good narrative?
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So who are 'they'?

'hEDS' is defined as EDS only involving joints without other systems involved. I know this because I wrote one of the first papers purporting to show otherwise*.
The whole thing is a muddle.

There are people with lots of symptoms but it does not help to give them the wrong name.

*
Ann. Rheum Dis. 1981 Dec;40(6):541-6.
A clinical and echocardiographic study of patients with the hypermobility syndrome
R Grahame, J C Edwards, D Pitcher, A Gabell, W Harvey
 
I think the Guardian, like other media, likes to publish 'human interest stories' including medical ones. I don't think they are so much championing the individual's particular perspective on medicine, as championing a story of someone who says they have succeeded against the odds with their own health and are helping others. It doesn't matter to the Guardian whether there is sound research evidence to back up the story.
 
Trish said:
I don't think they are so much championing the individual's particular perspective on medicine, as championing a story of someone who says they have succeeded against the odds with their own health and are helping others.
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I agree but why then do they not champion PWME?
Remember that the EDS story was primarily popularised by Hans Knoop.
Basically when it comes to medicine the Guardian prefers popular memes to science.
 
Jonathan Edwards said:
I agree but why then do they not champion PWME?
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I suspect it's mostly down to SMC influence, but they have published some good ME opinion pieces by George Monbiot and Frances Ryan.

I think it's hardly surprising this particular doctor is getting lots of patients. There are so many ill served by medicine who are suffering pain and disability from all sorts of ill defined causes, and all we want to do is have a name attached to our problem in order not to be classed as whingers and malingerers, and some treatment that reduces our symptoms and makes life more bearable. If that is a need being fulfilled by this doctor, I can't blame her for trying to help others with similar symptoms to her own.

Given that there seem to be lots of people who both have loose joints that are painful and sometimes dislocate, and at the same time have a collection of other symptoms such as allergies/MCAS, digestive problems - IBS, reflux, etc. what is the best way to help them?
 
https://www.thenorrislab.com/research/ehlers-danlos-syndrome

Another link to the Norris lab who are doing the research on hEDS but I can't see a link to an article on the genetic basis of hEDS.

There is a more detailed 2020 article on hEDS which I haven't yet had the time to read fully but it does say the genetic basis of hEDS is still unknown.

https://anatomypubs.onlinelibrary.wiley.com/doi/10.1002/dvdy.220

Abstract
The Ehlers-Danlos syndromes (EDS) are a group of heritable, connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. There is phenotypic and genetic variation among the 13 subtypes. The initial genetic findings on EDS were related to alterations in fibrillar collagen, but the elucidation of the molecular basis of many of the subtypes revealed several genes not involved in collagen biosynthesis or structure. However, the genetic basis of the hypermobile type of EDS (hEDS) is still unknown. hEDS is the most common type of EDS and involves generalized joint hypermobility, musculoskeletal manifestations, and mild skin involvement along with the presence of several comorbid conditions. Variability in the spectrum and severity of symptoms and progression of patient phenotype likely depend on age, gender, lifestyle, and expression domains of the EDS genes during development and postnatal life. In this review, we summarize the current molecular, genetic, epidemiologic, and pathogenetic findings related to EDS with a focus on the hypermobile type.


edited: last half of sentence above second link added.
edit2: abstract added
 
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Trish said:
Given that there seem to be lots of people who both have loose joints that are painful and sometimes dislocate, and at the same time have a collection of other symptoms such as allergies/MCAS, digestive problems - IBS, reflux, etc. what is the best way to help them?
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I don't think we have good reason to think these things are associated. It is just that some fringe doctors (like Knoop) have invented an association and gathered together lots of people who are persuaded that they have it.

All the evidence I have seen from reasonably well conducted studies suggests that this is a spurious concept. Remember that up to 60% of women may qualify as having loose joints on the criteria that get used. In 35 years as a rheumatologist I only ever saw one man with recurrent shoulder dislocation - and only the shoulder. I saw lots of people who thought they had had dislocations but hadn't

Each problem should be treated on its merits.
 
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