• 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. E

    Trial By Error: MEGA’s Latest Failure

    Oh, that's a worry. I think we need critiques to be as factual and as cordially phrased as possible, to have impact outside of the ME circle.
  2. E

    Recommended reading for doctors about pediatric ME?

    A friend of mine is looking for info about pediatric ME, for a doctor (in Sweden) who wants to learn more. She's only interested in biomedical, high quality information. Is there perhaps something similar to IACFS/ME's Primer for Clinical Practitioners, but focused on children? Tymes Trust's...
  3. E

    New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

    Absolutely wonderful! Super encouraging! :thumbsup::thumbsup::thumbsup: I'm overwhelmed with deep gratitude and admiration... at a loss for words. I can't understand why NIH isn't throwing all their money at him, already! There's so much to love about this video, about Dr Davis and his team...
  4. E

    Counter petition to the MEGA petition, brainstorming stage

    If anyone launches a good counter petition, asking that CCC be used, that all researchers with a history in research involving CBT, GET, or psychological/BPS models of the disease mechanisms are excluded, and that data be shared -- I would sign that and share widely!
  5. E

    Alem Matthees analyses on released PACE data blast "recovery" claims - huge damage to PACE

    This may have been discussed already (apologies for not being able to read the entire thread), but doesn't a blog publication like this jeopardize publication in a peer-reviewed journal, which is what we really need at this point? Anyone who is in touch with the re-analysis authors, please pass...
  6. E

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    Thank you so very much for your detailed and very helpful reply! I really appreciate you taking the time to answer my question, very kind of you :)
  7. E

    Ron Davis at San Francisco rally: very close to a biomarker, looks like a mitochondrial problem

    Thank you so much for clarifying the organizational structure, @Rose49. A question: How does Ron's CFS Research Center at Stanford relate to José Montoya's ME/CFS research group at Stanford? Again, many thanks to you, to Ron, to your daughter and to Linda T. Love and thoughts for Whitney - he...
  8. E

    International petition: Get Sweden to support international ME/CFS projects

    I agree, this is sadly counterproductive. It lacks understanding of how the research funding system works and will signal to decision makers that the ME community doesn't care to gather knowledge before making demands - making the patient group easy to dismiss. This will mar future efforts to...
  9. E

    OMF, Ron Davis and James "DNA" Watson launch END ME/CFS Project

    I'm excited about the End ME/CFS project and think the scientific board looks great, with one exception... as previously mentioned, Watson is a very controversial figure, and I'm afraid his name won't lend credibility so much as the opposite for a lot of people... I agree, Tuha, that is the...
  10. E

    Science at the UK CMRC Conference, 1-2 Sept 2014

    Thank you, Jonathan Edwards and Charles Shepherd for reporting on the conference and continuing the discussion with us patients! I have a question (which I think is similar to one previously posted): it seems in the summaries the conference mostly dealt with fatigue, not with other typical...
  11. E

    Hope: Double-Edged Sword or a Light in the Darkness

    Here's what I do: I remain hopeful that things may get better, but I don't focus that hope on any specific time period (for example, "I'll be better by summer" or "by Christmas" etc). This way I can still keep hope, but avoid the disappointment.
  12. E

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    If AfME is changing direction that is a very welcome thing, but I think this charity has a lot to prove. Other UK charities have been consistent in their demands for biomedical research and their opposition to the NICE guidelines and the psychosocial research such as the PACE trial - I have...
  13. E

    CDC Study Must Include CPET, NK Cell and Viral Testing, Advocates Insist

    Letter sent! Have also asked a few friends.
  14. E

    Gulf War Illness (/CFS): two subgroups in response to exercise challenge?

    Thanks for this, Simon! This passage... "But they didn’t find the expected drop off in performance on the exercise bike at the second test (this fits with the latest results for CFS patients presented by Christopher Snell at the FDA workshop)." ...made me a bit worried. Did Chris Snell...
  15. E

    "Fatigue is not a disease" - Unger Responds, Advocates Launch Petition

    Can we sign the petition from anywhere in the world or do you have to be a US citizen for the signature to count?
  16. E

    What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

    Thanks Alex, I've heard that too. But with that reasoning/excuse, they should be able to say that if they just got good enough applications, they would be willing to fund ME/CFS research at a level corresponding to, for example, that of MS, right? I haven't been able to watch the CFSAC...
  17. E

    What the Obama/Biden Victory Means For the Chronic Fatigue Syndrome Community

    I agree, Sasha. I also thought this part from Dr Joan Grobstein's written testimony was excellent: "NIH research funding for CFS is currently $6 million per year. This level of funding is 220th out of 232 diseases. There is no funding for ME, i.e., no funding that requires using the...
  18. E

    Chase Contest For ME/CFS Non-profits Has Begun

    Will wait patiently! :-) And will alert all my friends and ask them to vote.
  19. E

    Chase Contest For ME/CFS Non-profits Has Begun

    I searched for other CFS organizations, and there I still have the Vote button, nice and green. And my bonus vote is in, I can see it up in the right hand upper corner. Are there written rules somewhere saying you CAN for sure vote twice for the same org? (Do I need to just wait until...
  20. E

    Chase Contest For ME/CFS Non-profits Has Begun

    Can't seem to! It says "Voted"!
  21. E

    Chase Contest For ME/CFS Non-profits Has Begun

    Can I vote for the same organization twice? I have voted for NIDA and Phoenix Rising (searched for NEID) and now have one bonus vote. Can I vote for PR again or must I choose a third org? (In that case, which is in third place of the ME/CFS orgs?)
  22. E

    PHANU Rising II: Dr. Marshall-Gradisnuk Talks on Rituximab, Biomarkers and Chronic Fatigue Syndrome

    Why PHANU need our support and reasons to hope for ME/CFS/Fibro: http://www.sarahsworld.me/2012/08/why-phanu-need-our-support-and-reasons.html?spref=fb
  23. E

    'PHANU Rising': Australian Chronic Fatigue Syndrome Research Lab Making Waves: Pt I

    PS, about Norwegian research: I would advice a little caution, though, when it comes to research from Vegard Bruun Wyller, a pediatrician with his feet planted firmly in the psychosocial camp. Even though both he and Barbara Austrheim-Baumgarten are at Oslo University Hospital, they are in two...
  24. E

    'PHANU Rising': Australian Chronic Fatigue Syndrome Research Lab Making Waves: Pt I

    "Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe." Hey, don't forget Norway! Both the effort at Oslo University led by Barbara Austrheim-Baumgarten (her ME/CFS unit is creating an ME/CFS biobank and launching some really interesting biomarker...
  25. E

    The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

    Important question: Does the phrase about two Program Announcements on ME/CFS mean that the NIH will finally launch new ME/CFS programs with clearly allocated funding for ME/CFS? (the thing that they DIDN'T do in connection with the Workshop) Cort, or Bob or Courtney, could you help me out...
  26. E

    Visible and near-infrared spectra collected from the thumbs of patients with CFS for diagnosis

    I've been wondering about that study as well. Does anyone know?
  27. E

    Problems with Prof De Meirleir's clinic

    Ollie, you are not alone. I know many patients who have been to see Dr De Meirleir and they are having a really hard time dealing with his clinic (it's not just him who doesn't answer e-mails, his secretary doesn't either... once she said to a patient who was chasing something via the phone...
  28. E

    Self test for Th1/Th2 balance

    It's the same old H2S test from De Meirleir, isn't it? The one that was launched at a London conference a few years ago, and which other researchers/physicians seem less than enthusiastic about?
  29. E

    Article: UK Govt Turns New Leaf ? (Why the UK Loves ME/CFS More (!) )

    kermit frogsquire, I think, to put it mildly, that it's pushing it a bit too far to start mentioning Cort and Simon Wessely in the same sentence.... To me Phoenix Rising is the best ME/CFS blog on the webb, so once again, thanks Cort for all that you are doing for us! According to Invest in ME...