• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Janet Dafoe

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

    It’s not a negative or bad thing. We are happy to have Cort take over. Nothing controversial or adversarial happened. We asked him to do it. We are happy.
  2. Janet Dafoe

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

    I’m just so so glad that PR has survived and is still here for all the patients and others for whom it is such an amazing resource.
  3. Janet Dafoe

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

    I don’t know what intransparent pulling of strings means but we are the ones who brought him back! We have all resigned and are thrilled that Cort is taking over. You’re welcome!
  4. Janet Dafoe

    Attitudes towards ME/CFS Researchers

    Did you watch the 5 video updates I recently made? If you don’t watch them then you’re not gonna know what’s being followed up on are you? Ron actually really knows how to do science. He knows how to use the money the most efficiently and follow up on the most promising things. He is very...
  5. Janet Dafoe

    Blood samples needed for itaconate shunt research: California, USA

    She uses email. That’s why I gave her email address. Thanks for offering to help!
  6. Janet Dafoe

    Blood samples needed for itaconate shunt research: California, USA

    I am sorry, but until they perfect some more technology that they are working on, they can only use fresh blood because it has to be processed right away. Thank you so much for wanting to help!
  7. Janet Dafoe

    Ron Davis Update

    Look above in this thread for our third video which is an update on the metabolic trap. It is definitely not dead.
  8. Janet Dafoe

    Ron Davis Update

    You’d have to get it from the gut into the bloodstream and from the bloodstream into the cells and from the cells into the mitochondria and it’s not clear that eating it would accomplish that.
  9. Janet Dafoe

    Ron Davis Update

    Here is a good place to order it: https://www.walkinlab.com/categories/view/home-hair-tests
  10. Janet Dafoe

    Ron Davis Update

    Diagnostics: first you have to do enough tests to demonstrate that it’s reliable in discriminating between MECFS patients and others. Then you submit this data to the FDA with a request for it to become an approved diagnostic test. If it’s approved, then the only labs that can do it are CLIA...
  11. Janet Dafoe

    Ron Davis Update

    Yes, the plan is to publish this work. At the moment they are focusing on the FDA drugs and the Chinese herbs are a fall back in case they can’t make those work.
  12. Janet Dafoe

    Ron Davis Update

    Doctors Data
  13. Janet Dafoe

    Ron Davis Update

    https://med.stanford.edu/sgtc.html or OMF.ngo and specify it’s for Ron Davis’s research Thank you so much! They couldn’t do this work without all these donations from patients, that’s for sure!
  14. Janet Dafoe

    Ron Davis Update

    Some of the piyruvate gets taken up into the I taconite shunt and just goes around and round in the shunt and is unavailable to the citric acid cycle.
  15. Janet Dafoe

    Ron Davis Update

    I agree! In fact, that’s what I advised him before the interview. But he’s not so great at that. Especially since he loves talking about all his cool devices!
  16. Janet Dafoe

    Ron Davis Update

    His scientific talks are often spectacular and scientists are really impressed, but sometimes interviews get a little murky.😆
  17. Janet Dafoe

    Ron Davis Update

    This is an additional hypothesis at this point and they are continuing to pursue both of them and exploring how they are related. The third video is going to be an update on the metabolic trap.
  18. Janet Dafoe

    Ron Davis Update

    No, it was just that the interview questions didn’t elicit much that was new and interesting. I imediately noticed this and proposed that I interview him because I know what’s happening and exciting in the lab. So I am going to make a bunch of videos with everything that’s going on in the lab...
  19. Janet Dafoe

    Whitney Dafoe’s New Year Message

    Happy New Years! [sound on] 2022 is the year of hope for ME/CFS. #2022hopeMECFS To celebrate, here is a video of me dancing for hope in 2022: My wish for this new year is for there to be no suicides due to ME/CFS. Every ME/CFS patient who takes their life is a huge loss to the whole world...
  20. Janet Dafoe

    Ron Davis Summary of ME/CFS Working Group At Stanford Meeting Sept 8-10, 2021

    ME/CFS Working Group at Stanford Meeting September 8-10, 2021 Summary, by Ronald W. Davis, PhD, and Janet L Dafoe, PhD This was a great meeting and showed a lot of activity and progress in ME/CFS in an ever-growing number of groups. Researchers presented unpublished and often preliminary...
  21. Janet Dafoe

    Ron Davis statement about NICE’s pausing publication of new guidelines

    Ron Davis Statement on NICE pausing new guidelines NICE has abruptly paused the publication of it’s new guidelines for ME/CFS, arguing that those who are treating patients need to agree with the guidelines. This is a false argument. Medical advice must follow the evidence and not personal...
  22. Janet Dafoe

    The Unsung Heroes of Our Time, by Whitney Dafoe

    The Unsung Heroes Of Our Time ME/CFS patients are the unsung heroes of our time. We fight the suffering in this world silently and never get recognition from anyone. But still we fight. For freedom. For life. From the shadows we rise like pond lilies. Shining light. Silently, unbeknownst to...
  23. Janet Dafoe

    it seems ron davis may have a new potential treatment

    He did not have a bad reaction to the med. Maybe you guys could hear what Whitney wrote and stop speculating. It just ends up spreading wrong information.
  24. Janet Dafoe

    it seems ron davis may have a new potential treatment

    I do not believe it is true that “most people” lose their benefits from Abilify after three months. That was not true in the study. And there is no data to show that. We must be careful about relying on prominent anecdotal reports of things
  25. Janet Dafoe

    Questions for Ron Davis

    Whitney started Abilify sometime in the fall of 2019 and reached 2 mg on February 17, 2020 and then took him a couple of months to notice and effect. And no, we have no idea how long anything else would take
  26. Janet Dafoe

    Questions for Ron Davis

    No
  27. Janet Dafoe

    Questions for Ron Davis

    $150,000 or so.
  28. Janet Dafoe

    Questions for Ron Davis

    They’ve been thinking about it but he doesn’t know.
  29. Janet Dafoe

    Questions for Ron Davis

    They’re trying to find parts. Ron doesn’t know. If they can’t find all the parts still have to figure it out from there. Maybe Ron can put some cost to it at that point.
  30. Janet Dafoe

    Questions for Ron Davis

    amoreau@umontreal.ca I found that email on a YouTube video that he put out