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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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What is POTS?

rosie26

rosie26

Senior Member
Messages
2,446
Location
NZ
I never knew the name of this symptom until I came to PR last year. I am staggered that doctors don't know much about it either. Seems like we have a lot symptoms that are not understood yet.
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
rosie26 said:
I never knew the name of this symptom until I came to PR last year. I am staggered that doctors don't know much about it either. Seems like we have a lot symptoms that are not understood yet.
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Like you, I'm baffled that so many doctors know nothing about POTS, NMH, Orthostatic Intolerance, and all the other "flavors" (many names, overlapping definitions) of autonomic dysfunction.

I understand that the specific names, diagnostic criteria, causation, etc. may be in dispute. Specialists in this area often disagree on the details. That kind of thing is understandable.

But ever since the Johns Hopkins study that was released in 1995 (Bou-Holaigah, et al) there has been a growing body of evidence that many patients with an ME or CFS diagnosis have some kind of autonomic dysfunction.

In fact, autonomic problems are now part of the checklist in at least one (ICC? can't remember...) set of diagnostic criteria. This is in stark contrast to the old CDC website (from a few years ago) which used to state categorically that CFS patients did not have any problem with orthostatic intolerance. :rolleyes:

How autonomic dysfunction can be completely ignored by so many doctors, for all these years, is beyond me!
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Violeta said:
Does your doctor know what POTS is?
<video link deleted>
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I posted my earlier response before I watched the video. I thought it was going to be more serious discussion of POTS so I waited until later to watch it.

Oops! I didn't realize it was a parody video. It was quite strange.
 
Violeta

Violeta

Senior Member
Messages
2,945
ahimsa said:
I posted my earlier response before I watched the video. I thought it was going to be more serious discussion of POTS so I waited until later to watch it.

Oops! I didn't realize it was a parody video. It was quite strange.
Click to expand...

Yes, it's silly. Just one person's way of saying how frustrating and ridiculous it is that doctors don't know what it is or what to do about it. It's a pathetic situation.
 
ahimsa

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Violeta said:
Yes, it's silly. Just one person's way of saying how frustrating and ridiculous it is that doctors don't know what it is or what to do about it. It's a pathetic situation.
Click to expand...
I got it! I just did not want to take your thread too far off topic. :)
 
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