-
Fact sheet drafting HERE! Fact sheet #4 - Management of severe and very severe ME/CFS - comments by 21st April please
Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.
- Thread starter Jonathan Edwards
- Start date
Seems to me that once a medical professional throws tick-borne diseases like Lyme into a disease mix, we veer away from medicine and more into politics. It's been my experience that a large majority of clinicians and researchers have no real clue - they frequently merely mouth sound bites they heard from some other place.
nataliezzz
Senior Member (Voting Rights)
I've been seeing lots of Twitter posts recently about hEDS and hypermobility spectrum disorder (HSD) being recognized as being the same thing...
Jonathan Edwards
Senior Member (Voting Rights)
It seems that they more or less are, but that also implies that hEDS is not a form of EDS (not the hypermobile subset of EDS).
The problem is then that HSD includes symptoms as a defining feature - so that it is not simply having different connective tissue. This makes it unworkable as a 'disease' category. The evidence for hypermobility per se being linked to fatigue or even generalised pain is pretty much zero. And it does not make much sense to call a spectrum a disoder. It will be a whole range of 'disorders' and so there will be be no consistent biomarkers.
The mess continues.
My initial reaction was "Medicine is still respected and well paid" but then realized, I chose not to study medicine because I didn't want to spend my youth being exploited with unhealthy hours for crap wages.
I was only diagnosed 5 months ago, but I've already noticed all the questionable personalities and organizations in the ME/CFS space, including those that are qualified to practice medicine. To some degree it may be the nature of an unsolved problem, there is way too much latitude for even qualified individuals to project their biases, let alone all the lesser idiots and charlatans.
Lack of evidence and logic are fertile grounds for fantasists and grifters of all persuasions.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
I agree.
I did a video interview for Portugal Millions Missing for Joan Hoffman on Tuesday. We spent quite a bit of the time talking about these problems. I suggested everyone joined S4ME.
Binkie4
Senior Member (Voting Rights)
I have been seeing a lot online from Ehlers Danlos UK recently.
1.There was a report yesterday of a piece of research from Edinburgh University
"Kathryn Berg and Dervil Dockrell undertook the study at the University of Edinburgh, exploring the lived experience of individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) in the UK during 2023–2024. EDS UK supported the promotion of the study resulting in over 2000 participants."
2.,There was also a report of a Westminster Hall debate.
"Through more than 3,500 e-actions reaching 98% of all MPs, our community ensured that people living with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and associated conditions could no longer be ignored. Our collective effort as a community, and collaboration as one of the founder members of the Overlapping Illness Alliance, led directly into parliamentary drop-ins in November 2025 and the Westminster Hall debate on 26 March 2026.
In that moment, our vision was realised:
Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.
And Parliament listened."
I wonder what the "associated conditions" referred to above are. Edit.
We are an alliance of charities representing people with Myalgic Encephalomyelitis (ME), Long Covid, Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder, Postural Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS).
1.There was a report yesterday of a piece of research from Edinburgh University
"Kathryn Berg and Dervil Dockrell undertook the study at the University of Edinburgh, exploring the lived experience of individuals with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorder (HSD) in the UK during 2023–2024. EDS UK supported the promotion of the study resulting in over 2000 participants."
2.,There was also a report of a Westminster Hall debate.
"Through more than 3,500 e-actions reaching 98% of all MPs, our community ensured that people living with Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD) and associated conditions could no longer be ignored. Our collective effort as a community, and collaboration as one of the founder members of the Overlapping Illness Alliance, led directly into parliamentary drop-ins in November 2025 and the Westminster Hall debate on 26 March 2026.
In that moment, our vision was realised:
Across the UK, people with EDS or HSD will be connected, heard, supported and have equitable access to care.
And Parliament listened."
I wonder what the "associated conditions" referred to above are. Edit.
We are an alliance of charities representing people with Myalgic Encephalomyelitis (ME), Long Covid, Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder, Postural Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS).
Last edited:
Peter T
Senior Member (Voting Rights)
Can we always be certain if certain symptoms seen in someone with such as ME/CFS reflect a distinct bit cooccurring condition are a down stream consequence of the ME/CFS?
I have IBS type symptoms that appear as part of PEM. These symptoms largely vary with my ME so are they part of my ME or do I also have concurrent IBS. I did have an episode of IBS symptoms associated with salmonella poisoning around a decade before my ME onset, but they did not reappear until after that onset. However, since my ME started I have also developed food intolerances which also trigger IBS type symptoms. Subjectively I feel my IBS type symptoms are ME symptoms rather than an additional condition, but one could argue the other way.
Similarly my food intolerances seem to post date my ME onset; are they part of the ME, are they a separate condition triggered by the ME, are they a down stream consequence of having ME resulting for change in diet or a sedentary lifestyle or are they purely coincidental? They post date my ME and the symptoms they trigger overlap my ME symptoms, their impact like PEM is delayed, with gluten by 24 hours, however they do not seem to vary with my current ME status, for example any response to gluten depends on the quantity of any gluten containing food consumed not my current ME severity. Subjectively it feels my food intolerances are now distinct to my ME, but I feel they were somehow triggered by my ME.
One could go through similar discussions about migraines, orthostatic issues, autonomic issues, vitamin deficiencies, frequent urination, perhaps even depression.
For many years I needed to urinate more frequently when in PEM, but reverted to normal when out of PEM. However as I become an old man, I have developed the old man condition of benign enlarged prostrate, and my need to urinate now seems primarily impacted by my prostate and its treatment, to the extent that any impact of PEM is not noticeable. Here the simplest explanation is probably that whatever the previous impact of my ME, my current prostate issues are not directly related to my ME, but can I be sure it was not a trigger.
Because of the length of time people have ME, because of the variation in symptoms and because of the non specific nature of many ME/CFS symptoms and because the multiplicity of our symptoms it may be until we understand its biological underpinnings they will be a distinct grey area around what the relationships between ME/CFS and presumed cooccurring conditions are.
I have IBS type symptoms that appear as part of PEM. These symptoms largely vary with my ME so are they part of my ME or do I also have concurrent IBS. I did have an episode of IBS symptoms associated with salmonella poisoning around a decade before my ME onset, but they did not reappear until after that onset. However, since my ME started I have also developed food intolerances which also trigger IBS type symptoms. Subjectively I feel my IBS type symptoms are ME symptoms rather than an additional condition, but one could argue the other way.
Similarly my food intolerances seem to post date my ME onset; are they part of the ME, are they a separate condition triggered by the ME, are they a down stream consequence of having ME resulting for change in diet or a sedentary lifestyle or are they purely coincidental? They post date my ME and the symptoms they trigger overlap my ME symptoms, their impact like PEM is delayed, with gluten by 24 hours, however they do not seem to vary with my current ME status, for example any response to gluten depends on the quantity of any gluten containing food consumed not my current ME severity. Subjectively it feels my food intolerances are now distinct to my ME, but I feel they were somehow triggered by my ME.
One could go through similar discussions about migraines, orthostatic issues, autonomic issues, vitamin deficiencies, frequent urination, perhaps even depression.
For many years I needed to urinate more frequently when in PEM, but reverted to normal when out of PEM. However as I become an old man, I have developed the old man condition of benign enlarged prostrate, and my need to urinate now seems primarily impacted by my prostate and its treatment, to the extent that any impact of PEM is not noticeable. Here the simplest explanation is probably that whatever the previous impact of my ME, my current prostate issues are not directly related to my ME, but can I be sure it was not a trigger.
Because of the length of time people have ME, because of the variation in symptoms and because of the non specific nature of many ME/CFS symptoms and because the multiplicity of our symptoms it may be until we understand its biological underpinnings they will be a distinct grey area around what the relationships between ME/CFS and presumed cooccurring conditions are.