• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. Cort

    Screaming Tinnitus

    Interesting about tinnitus - mine is raging at the moment. Diamox is also used for idiopathic intracranial hypertension (IHH) - which appears to be almost ubiquitous in ME/CFS. Health Rising has a blog coming up on Dr. Kaukman's and Dr. Ruhoy's talk on it. Here's a blog on IIH...
  2. Cort

    Daughter's recovery details

    What a great story! Thanks for relaying it so well. So glad to hear that your daughter is at University :)
  3. Cort

    Philadelphia Inquirer article With Fauci on ME/CFS and Long COVID

    Good to see Fauci engaged a bit more. There are between 1 and 2 million with this affliction in America today, and with the ongoing COVID crisis, the ranks of the afflicted threaten to grow by many more millions. The layers of their life often strip away like paint, and a first casualty is...
  4. Cort

    To Have a Pet or Not with ME/CFS, Fibromyalgia and/or Long COVID + a Good-Bye to River

    A recent blog from Health Rising. It's not all about the research or even finding good treatments. It's also about getting through these diseases in as good shape as possible, and for me - my dogs, River and Skye - have been a big help. Whether or not to have a pet when you have ME/CFS, FM...
  5. Cort

    Beth Mazur

    So sorry to hear about Beth! I only met with her a couple of times but was always impressed by what a genuinely nice and generous person she was. I wonder if she got COVID and things got worse or if things just declined for her. So hard to hear about someone who was so vital in spite of her...
  6. Cort

    Article A Gut-Immune-Energy Model: Pt. II – The Armin Alaedini Interview

    This is the first Health Rising post to appear on PR. Fittingly, it's by Bronc - a PR member. Health Rising covered this fascinating gut/immune/metabolic study in an earlier blog. Now Bronc is back with an interview with Dr. Armin Alaedini – the senior author of this study. Note that we just...
  7. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    These are real and unique assets!
  8. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    I agree with everything you said! I'm going to check out some Forums and see if they've done anything to bring Facebook/Twitter users etc. back.
  9. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    It's a great Forum - I was just checking it out - and I think Phoenix Rising is different. I came up with the name Phoenix Rising because of a vision of a phoenix - us - rising from the ashes. My focus has always been on the possibilities that research efforts, treatments of all kinds, and...
  10. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    I was surprised by this as I started both with the same intention but I don't think you have to worry. Both grew out of a personal quest to dig deep into what's going on with ME/CFS - particularly the research - and communicate about that. Along with that came an intention to be open-minded...
  11. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Thanks Brenda, good to be back :)
  12. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Hi bertiedog - I remember you. For those who don't know Rich (who died of a heart attack) played a huge role on the Forums and enormous threads were devoted to his hypotheses and treatment suggestions.
  13. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Right - there will no longer be a board. Having a board is a requirement for a non-profit and having a board is no easy thing. When I was running PR we had a small board and always wanted to bulk up the board but it was always very hard to find people willing to do that. So while having a board...
  14. Cort

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Thanks so much everyone! It's like coming home (hi Sushi, Wayne and Dolphin :)) after being away for a long time. I hope we can find a way to re-invigorate the Forums. I believe they are still the best means of communication available - they are the only venue that I can think of that provides...
  15. Cort

    Article May 12, 2023 Is International ME/CFS Awareness Day

    What a nice meditation on how things have changed. Sometimes, oftentimes, in the midst of all the challenges we face personally and as a disease, we forget how far we HAVE come. I just watched an ME/CFS conference in Germany. Germany! Germany had nothing going for ME/CFS ten years ago. It was a...
  16. Cort

    Tissue specific signature of HHV-6 infection in ME/CFS (Bhupesh Prusty)

    Exciting stuff....Looking forward to the full paper. I wonder where he got his samples from _ I heard a bank was opening in Stanford but wasn't sure. Maybe this will give that bank proposal a boost. The patients were so severe that they died - so we don't know if the same findings are...
  17. Cort

    Small Fiber Polyneuropathy (SFPN) Proposed as Cause of Exercise Intolerance In ME/CFS

    With regards to root cause Systrom thinks it may be SFPN - Time will tell!
  18. Cort

    Small Fiber Polyneuropathy (SFPN) Proposed as Cause of Exercise Intolerance In ME/CFS

    Time will tell. IVIG works really well for some and not all that well for others. Certainly not a miracle drug - and so expensive. If it wasn't so expensive it wouldn't be a miracle drug. She does like steroids....but apparently very little study on that.
  19. Cort

    Small Fiber Polyneuropathy (SFPN) Proposed as Cause of Exercise Intolerance In ME/CFS

    It makes sense to me. Oaklander agrees with the problems regarding test standardization or rather that the reference norms labs use are not effective with false negatives being the main problem. If you have a URL to that study or the post that would be great to have. ASIC3 makes me think of...
  20. Cort

    A Demon on My Life - Superb Play on ME/CFS - Available Online

    Really surprised how right they got this. The creator of the play used a close friend to learn about ME/CFS. The acting is great as well. From a review of the play on Health Rising: https://www.healthrising.org/blog/2020/06/29/review-demon-on-my-life-chronic-fatigue-syndrome-play/ They...
  21. Cort

    Small Fiber Polyneuropathy (SFPN) Proposed as Cause of Exercise Intolerance In ME/CFS

    Just did a blog on this - it was prompted by two media articles - which described the many different symptoms that SFPN can cause. I was a bit surprised. Oaklander, though, clearly thinks that much of FM is SFPN...
  22. Cort

    Narrowed Small Blood Vessels Linked to Fatigue in ME/CFS - HealthRising

    Isn't that something - the GIST is being used - I'm glad :)
  23. Cort

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    Fascinating that it worked so well. I'm pretty sure that an IV saline study is underway in ME/CFS. I think it's more important as an indicator of something rather than a treatment although many people have been helped at least temporarily by saline...
  24. Cort

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks! And thanks for others who added a lot to the NUCCA chiropracter issue.
  25. Cort

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    A doctor in New York is looking for people in the area who are able to properly assess CCI/AAI - does anyone know of any? We should make a list of good diagnositicians. I'm happy to put on Health Rising.
  26. Cort

    Dr. MONTOYA fired in Stanford!

    Interesting - I didn't know he had to publish in toxoplosmosis or whatever it is to keep going. There is another doctor I believe at the clinic