1. NancyM

    How much ORS?

    I’ve been taking the new WHO ORS formula for about a year when my POTS acts up, 1-3x/week and it has really helped. This year though I’ve been in a heavy CFS flare and POTS has been extremely bad last two months. If I take the ORS 2-3x most days it evens out. I’m hoping this situation will not...
  2. G

    Case report of Adalimumab in POTS

    Put the kettle on, make yourself a cuppa, grab some biscuits, etc, this, my first, is going to be a long post. The context: Since retiring from medicine I started hearing that many of my former colleagues and their families were not recovering from Covid-19 infection, many having persistent or...
  3. Not dead yet!

    Getting off of beta blockers - try number 84565639903 ;)

    I think beta blockers are pretty evil, especially if you have adrenaline issues already (which I do). I'd rather use an ACE inhibitor if one could be identified that had proper testing for use in migraine. However, it's ideal to not be taking drugs unless absolutely the last resort. So I'm...
  4. Cort

    Hypocapnic Cerebral Hypoperfusion: A New Kind of Orthostatic Intolerance

    Dr. Peter Novak MD, PhD, of Brigham and Women's Hospital at Harvard University uncovers a new kind of orthostatic intolerance which is not characterized by high heart rates (POTS) or low blood pressure (neurally mediated hypotension (NMH) but by low carbon dioxide levels and low blood flows to...
  5. Cort

    D. Peter Rowe on Understanding, Managing and Treating Orthostatic Intolerance

    In 1995 and then in 1997 Dr. Peter Rowe was the first doctor to call attention to the orthostatic intolerance present in chronic fatigue syndrome (ME/CFS) and fibromyalgia. Since then this doctor/researcher has published are reported widely on orthostatic intolerance, chronic fatigue syndrome...
  6. Cort

    POTS Rising! Research & Advocacy Producing Breakthroughs in Neglected Disease

    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...
  7. W

    Seeking Advice in Recalibrating Treatment Strategy

    Hi all. I'm currently in a crashy period and have hit a wall finding an attentive, knowledgeable doctor who can help me recalibrate my treatment and lifestyle regimens in search of some relief, so I'm turning to you all! I hope you enjoy solving puzzles... ;) I'm diagnosed with ME/CFS, POTS...
  8. Vansails

    dr chheda skype appointment and introduction

    hello everyone I've been reading this site for many years and want to introduce my story and ask for help with ideas for treatment, research relevant to my case, medication that may help me, and anything else people would like to comment on. the more info the better, especially around...
  9. C

    POTS - Symptom of nutrient deficiencies

    Neurological Research A Journal of Progress in Neurosurgery, Neurology and Neurosciences Volume 39, 2017 - Issue 8 Vitamin B1 deficiency in patients with postural tachycardia syndrome (POTS) Svetlana Blitshteyn Pages 685-688 | Received 07 Feb 2017, Accepted 14 May 2017, Published online: 21...
  10. Vansails

    flying with cfs/me

    can anyone please explain to me why flying with cfs/me causes such awful "crashes"??? no pun intended :P i used to take hyperbaric oxygen treatment - can't remember the pressure - but it made me very sick and ill each time, i now understand that is because my mitochondria cannot utilize the...
  11. Cort

    Midodrine for Chronic Fatigue Syndrome (ME/CFS), POTS and Orthostatic Intolerance

    Midrodrine or ProAmatine is vasopressor/antihypotensive drug approved for use in the U.S. for the treatment of dysautonomia and orthostatic hypotension. It works by producing a metabolite which activates alpha-adrenergic receptors found in arteries and veins which then constrict the blood...
  12. Lycosa

    New here... advice on finding Diagnosis/Treatment?

    Hello, I am new here and I'm not sure if I am in the right place - I haven't been diagnosed with ME/CFS or Fibro or, well, anything specific yet. All I have is an ever increasing list of bizarre symptoms, and medical bills, and frustration. The most recent developments have been POTS and...
  13. Issie

    Protomyxzoa Rheumatica = Mold/Fungus --Gene defect and lack of a protein

    https://www.ncbi.nlm.nih.gov/pubmed/28411089 Dr Fry, Doctor/bioscientist - who found Protomyzoa Rehumatica - now has determined it's a type of mold/fungus. (We found it in my thyroid biopsy.) He just got a peer reviewed paper in Pubmed. He has determined that with us, who have issues with it...
  14. Cort

    Desmopressin Does it For ME/CFS/POTS patient

    From a 2016 IACFS/ME Conference Overview Complete Treatment using desmopressin of suspected central diabetes insipidus, POTS and/or ME/CFS following a series of adverse immune events A poster from the Bateman-Horne Center highlighted the complete recovery of a person with severe ME/CFS and...
  15. Cort

    Treating Orthostatic Intolerance in Chronic Fatigue Syndrome (ME/CFS)

    Orthostatic intolerance (OI) refers to the inability to be vertical — sitting in a chair, or standing — without developing symptoms. The simple act of standing requires a complex set of interactions involving the autonomic nervous system, blood vessels, muscle and heart which work to keep the...
  16. Cort

    Things To Avoid In POTS

    Air travel, alcohol, medications, large meals and more, DINET (Dysautonomia Information Network) provides a long list of things POTS patients might wish to avoid. Check them out here
  17. Cort

    Recommended Doctors for People with POTS / Dysautonomia

    Check out a list of recommended doctors for POTS in the U.S., Canada, the UK and Australia plus links to other lists. https://www.facebook.com/notes/dysautonomia-postural-orthostatic-tachycardia-syndrome-pots/list-of-recommended-doctors-updated-93016/750344044988804
  18. Cort

    Recommended POTS / Dysautonomia Doctors

    Check out a list of recommended doctors for POTS in the U.S., Canada, the UK and Australia plus links to other lists. https://www.facebook.com/notes/dysautonomia-postural-orthostatic-tachycardia-syndrome-pots/list-of-recommended-doctors-updated-93016/750344044988804
  19. Cort

    One Gene Many Disorders: Genetic Finding Could Help Explain POTS, EDS, IBS, FM, ME/CFS and Others

    First, at least for me, there was chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). Then I learned about irritable bowel syndrome (IBS), then POTS and in the last five years Ehler’s-Danlos (EDS) and Mast Cell Activation Syndrome (MCAS). The more researchers looked the more they seemed...
  20. Cort

    Breaking Up POTS: Hyperadrenergic vs Non-hyperadrenergic

    Do you have POTS? If you do - do you know what kind you have? According to Vanderbilt breaking POTS into categories is not very useful - http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=42008 - because the categories are leaky; i.e. some people with one category have similar symptoms...

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