• Welcome to Phoenix Rising!

    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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  1. Z

    Article on "long-haulers" not recovering from COVID-19. Sound familiar?

    "I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms." Professor of infectious diseases Paul Garner https://www.abc.net.au/news/2020-05-19/covid-fatigue-one-of-worst-symptons-patients-say/12252602 further...
  2. Z

    0 correct on free VCS test?

    oh really . . . thanks Valentijn and Sushi - seems as though that test not worth much if it is so easy to get different results!!! In the meantime I went to Dr Shoemaker's site and did the paid test. That specified 18" away from the screen (as opposed to the other test's 48"!). On the...
  3. Z

    0 correct on free VCS test?

    OMG either I have some serious biotoxins, or I am doing something wrong! Are there any tips or tricks I should know about - I was unable to read the instructions from the specified 48" away from the screen (had to move in to read then out to do test). The box just looked black to me the whole...
  4. Z

    Autonomic specialist/s in Sydney?

    Thanks AV! I don't use Facebook but have just joined and hopefully through my foggy brain I can work it out and get some recommendation/s. Am managing it better past couple of days by doing NOTHING . . . but I am sure this will lead to deconditioning . . . vicious circle! Will also ask my GP...
  5. Z

    Autonomic specialist/s in Sydney?

    Hi, am having scary racing heart/raised BP upon any exertion, wondering if anyone knows whether there are any autonomic specialists/POTS specialists in Sydney? Dx POTS as BP dropped on standing and HR went up 30bpm, but after a while BP goes up and up. I was lucky enough to have a 2 year...
  6. Z

    Pyroluria/undermethylation treatment causing sudden relapse?

    Thank you PGHCFS and Msinnot for your replies. Msinnot - may I ask, how much potassium? Do I get it from the pharmacy or health food store, and what exactly do I ask for? Also, did you continue with the 50mg p5p and 50mg zinc PLUS potassium for the whole 6 weeks until you felt better? Or did...
  7. Z

    Pyroluria/undermethylation treatment causing sudden relapse?

    Hello, I am a 53yo woman who thought her ordeal with CFS was over until the past 3 weeks when I have been undertaking treatment for pyrole disorder and undermethylation. I suffered from CFS terribly in 2007 (housebound for 4 months, had to move back in with my parents as I could not look after...