POTS Rising! Research & Advocacy Producing Breakthroughs in Neglected Disease

[Cort]

[fright]

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If you think ME/CFS and FM are behind the eight ball at the NIH then check out postural orthostatic tachycardia syndrome (POTS), a common comorbidity. The NIH doesn't even measure POTS funding but then how it could? POTS doesn't even have a designated funding stream there.

That hasn't stopped POTS researchers, though, from making huge strides in understanding the disease - strides that appear likely to end in the recognition that POTS is an autoimmune disease.

Check out how a small band of researchers and a young but dynamic support organization are making a major difference in a largely neglected disease - a difference which could have implications for ME/CFS and perhaps even fibromyalgia. Find out more in a Simmaron Research Foundation sponsored blog

POTS Rising! Research & Advocacy Producing Breakthroughs in Neglected Disease​

 

[Merida]

I tried to post at the Simmaron site, but the form would not accept my name or email? ( Maybe iPad has old software? ) Anyway, thanks Cort for this very important, relevant article. I have suspicions that many, many, many CFS/FMS people have Orthostatic Intolerance of some sort but can not get diagnosed.

Ten years ago I 'vasovagaled' ( shivering, nauseous, faint) during some bladder studies where I was on a flat table ( for prep) that was then automatically moved into upright position. This was at a large research university. This was all noted in records but no one said anything more - no referral, no comments by any of my doctors!!!!!!! I did not know about dysautonomia/POTS/ etc. Still can not get any testing here in L.A. Unreal. Long story.

The autoimmune part seems important. Wonder if anyone has tried a Medrol dose pack and had good, long lasting results? I had terrible asthma following 1988 viral illness and was completely cured ( after 1 1/2 years) when a doc had enough courage to give me a big shot of prednisone, then a Medrol dose pack.

So frustrating. Thanks again, Cort.