Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

Isn’t Gaffney’s point the entire point of this thread, so most of us would tend to agree with him in this case? Must we keep reiterating what’s been said over the last 18 pages..?

(Edit to remove comment about dysautonomia international)
 
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Mij said:
"Over-diagnosis / misdiagnosis / self-diagnosis of EDS, MCAS, POTS, & Lyme is a real problem, and it would appear that there is little appetite by medical professionals to discuss this issue publicly."
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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.
 
I've been seeing lots of Twitter posts recently about hEDS and hypermobility spectrum disorder (HSD) being recognized as being the same thing...

 
nataliezzz said:
I've been seeing lots of Twitter posts recently about hEDS and hypermobility spectrum disorder (HSD) being recognized as being the same thing...
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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.
 
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