POTS Rising! Research & Advocacy Producing Breakthroughs in Neglected Disease

Discussion in 'Other Research' started by Cort, Apr 28, 2018.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member


    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 likes this.
  2. Merida

    Merida Well-Known Member

    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.