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

[Mij]

"Failure to diagnose/delayed diagnosis/misdiagnosis is a much larger problem in POTS, and we have the data to back that up. Where is your data that over-diagnosis/misdiagnosis/self-diagnosis is happening at scale?"

 

[Braganca]

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)

 

[Mij]

Also I think the woman behind “dysautonomia international” was pretty unsupportive of ME/CFS..

This account is supportive of ME/CFS based on her tweets.

 

[duncan]

"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."

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.

 

[Braganca]

This account is supportive of ME/CFS based on her tweets.

Maybe I’m thinking of someone else. Will delete comment.