• 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.

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

Search results

  1. rebecca1995

    Has there been any news from Dr. Davis or others?

    To those who are criticizing Ron Davis above: In the video, he says that he DID find private donors to support Rahim’s work on the nanoneedle, but Rahim’s department at UC Davis told him that if he wants tenure, he has to get NIH grants. Rahim has submitted several applications, all of which...
  2. rebecca1995

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    Janet and Ashley, thank you so much for starting this thread to keep us updated. I'm deeply grateful to Ron and all the scientists in the room. Janet, I see Ron has images of mold on his tie. Does that mean he thinks that mold is important to the pathogenesis of ME? (I realize you may not...
  3. rebecca1995

    Ben and Claire's adventure to Davis-Dafoe land!

    Ben, I'm so glad you have been able to make this trip! I hope the treatment you're getting gives you a lot, or even a little, improvement. Best wishes to you, Claire, and the entire Davis-Dafoe household. It's wonderful that you are getting to socialize a little bit with each other. That must...
  4. rebecca1995

    A unofficial update on Prof Davis and Janet Dafoe...

    I'm so grateful to Ron, Janet, Whitney and everyone at Ron's lab and OMF. Thank you!
  5. rebecca1995

    Edward Shorter to give talk on CFS at NIH

    This is an outrage! Can we get an MEAction petition to stop him from addressing NIH? Also, a statement and/or press release countering his shameful and abusive views?
  6. rebecca1995

    BREAKING NEWS: KARINA HANSEN HOME

    So glad to hear this! Woot!
  7. rebecca1995

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    @Rose49, I’ve been following your Twitter account, and I want to say how sorry I am that you’ve been on the receiving end of abusive posts from a few patients regarding the Naviaux paper. I’m shocked and appalled by these insulting comments, especially in light of what your daily life is like...
  8. rebecca1995

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    According to Cort's blog, the samples will be tested at UC Davis as well as Naviaux's lab. So, that's kind of independent.
  9. rebecca1995

    Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

    @Rose49, thank you so much for taking the time to post here, with all the struggles you have in your own life. Also, please convey to Dr. Davis and Dr. Naviaux my deepest gratitude for their stellar efforts on behalf of ME patients. I haven't been this excited about research in many years...
  10. rebecca1995

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    I'm thrilled by this amazing research! I'm so sad that Rich VanK didn't live to see this breakthrough. He would have loved the detailed biochemistry. At least his collaborator, Dr. Nathan, is an author of the paper!
  11. rebecca1995

    Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

    Absolutely. This blog is an attempt to discredit Dr. Davis, Dr. Kogelnik, the OMF, and the Davis family in the guise of "protecting patients." Why? Because the establishment has a vested interest in continuing the perception of CFS as a largely psychosomatic condition that can be treated with...
  12. rebecca1995

    Only $6,000 for major double-blind, large-sample immune-abnormality ME/CFS study! Please donate now!

    I tried to donate, but got an error message in Spanish and don't know what I did wrong! Is it too late to donate?
  13. rebecca1995

    Severe Patients’ Letter to the IOM

    The letter has been posed as a Paradigm Change blog: http://paradigmchange.me/wp/severe/
  14. rebecca1995

    Severe Patients’ Letter to the IOM

    Thank you for your support, everyone! :) Because some people have been unable to read the PDF on dropbox, I pasted the entire text of the letter into the first post of this thread.
  15. rebecca1995

    Severe Patients’ Letter to the IOM

    This letter to the IOM committee, about the needs of severely ill ME patients, was signed by nine severe patients. We understand and respect people's reasons for boycotting comments to the IOM, but we felt we had to protect ourselves from the CDC's harmful, pro-exercise guidelines, which were...
  16. rebecca1995

    Come Discuss The Blue Ribbon film (with Ryan Prior)

    Thanks for the info, Ryan! This sounds like a great project. I'm glad that you'd like to include the severely ill; here are some links that might give you ideas. • Jessica can't feed herself or sit in a chair: http://www.youtube.com/watch?v=VH-puNCQxh4 • Ben relies on caregivers to wash his...
  17. rebecca1995

    This Sunday, Nov 18: Memorial Teleconference for Rich Van Konynenburg

    Many thanks to Rivka, Sushi, Diana and everyone who participated. I thought the memorial service was wonderful. It helped with some of the pain we have felt since losing such an amazing person.
  18. rebecca1995

    Judy Mikovits has been arrested

    Dr. Mikovits was indeed slated to participate in a panel discussion at the Mt. Sinai conference tomorrow (Sunday). We don't know what she intended to say--we may never know--but we can reasonably conclude that the Whittemores sure as hell didn't want her to say it.
  19. rebecca1995

    Judy Mikovits has been arrested

    Keep in mind that the Whittemores have merely alleged that the materials are missing. No one has provided proof that the materials are not still in the Whittemores' possession. Why are people taking as facts the Whittemores' claims that the materials have disappeared, and that they did so...
  20. rebecca1995

    Judy Mikovits has been arrested

    Keep in mind that Dr. Mikovits is innocent until proven guilty, according to the US judicial system. I am sickened by the Whittemores' actions. I plan to write WPI and request a full refund of every donation I made.
  21. rebecca1995

    Article: Guilty!.... By Association? Taking Our Measure

    I support the excellent points made by Justin and Dr. Yes in this thread. Id like to make two more. 1. Cort, thanks for pointing out the ways in which the CAA has distanced itself from the Empirical Definition. I wish the CAA would go a step further and end two troubling practices...
  22. rebecca1995

    Knight Science Journalism Tracker on contamination stories

    This piece strikes me as a mixed bag. On the plus side, Raeburn points out that the claims of the Wellcome press release were not supported by the study it cited. And he rightly notes that Amy Dockser Marcus’s article was a “much more nuanced, and more accurate, interpretation of what the...
  23. rebecca1995

    Groundswell Campaign

    Great idea, Peggy! The photos look awesome. If you have the energy, you should post this on your blog to reach a wider readership. :Retro smile:
  24. rebecca1995

    Time for Action - easy daily advocacy campaign

    I meant to report earlier that I called both offices last week and it went really well. I kept each admin. assistant on the phone as long as possible--and they turned out to be quite sympathetic. I made sure they wrote down the famous question, then went into a lot more detail about my...
  25. rebecca1995

    NT Factor

    I tried it for about a year. It might have given me a slight boost energy-wise, in the way that CoQ10 and carnitine give me a boost, but it didn't have major benefit. I continued to be homebound and bedbound. On the other hand, it didn't seem to cause any ill effects--which is more than I...
  26. rebecca1995

    Article: Corinnes FOLLOW-UP APPOINTMENT WITH DR. PETERSON

    Corinne, I really appreciate the time and effort you took to share this with us. Thanks for providing so much invaluable information. I think it's interesting that you have elevated IL-8 and an IgG 3 subclass deficiency. Both these abnormalities were associated with XMRV infection in Dr...
  27. rebecca1995

    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    What doesn't seem fair or reasonable to me is twice devoting ink to an article that Cort had already stated "paints Dr. Mikovits in a rather negative light". Why would he feature Ms. Tsouderos' article on the "Buzz" page a second time if he didn't think her ideas about Dr. Mikovits should be in...
  28. rebecca1995

    Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

    [Color is mine.] Trine Tsouderos wrote only one article about ME/CFS and XMRV. It ran twice in the Chicago Tribune, on 6/8 and again on 7/27. Though it appeared under a different title the second time, the article was identical, word for word, to the first one. Many of us were surprised...