• 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. Advocate

    Meal replacement?

    We use Kate Farms vanilla, and yes, it's too sweet, but not as sickening as some.
  2. Advocate

    OMF-funded RBC Deformability Paper Published!

    Was the word “by” left out of a phrase in the third sentence?
  3. Advocate

    Comment by 'Advocate' in 'New Probiotic that appears to reduce many of the actual overgrowths seen in IBS and CFS Microbiomes'

    Ken, I have just started reading your blogs, and am finding them very helpful! How long have you been doing this? Have you written additional blogs that are not in the list on the right side of the page?
  4. Advocate

    Documentary: Undercover in German Lyme Clinics

    My daughter had 13 positive or equivocal test results from several different U.S. labs for Borrelia burgdorferei and other tickborne infections. She did not have a bullseye rash. For two years she was treated by an ILADS doctor who specializes in treating Lyme Disease with state-of-the art...
  5. Advocate

    How do you ANECDOTALLY define PEM?

    The above anecdotes are very similar, but they don't sound like "malaise" to me. To me, “malaise” indicates unhappiness, melancholy, depression, etc. Isn’t there a better word than “malaise” to describe what is happening here? A word that describes loss of function, not change in mood? - if...
  6. Advocate

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

    I've read your post several times, understanding a little more each time, but please, sir, what is "Cpn?" Thanks. .
  7. Advocate

    Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

    Thanks, Barb. I made the correction.
  8. Advocate

    Harriet Hall CFS: Rituximab Revisited in Science-Based Medicine

    Harriet Hall, in case you are lurking on this site, I am horrified by what you wrote on your blog: "He [Whitney Dafoe] posts as “Whit” on the Phoenix Rising forum." How do you know that “Whit” is Whitney Dafoe? Did he tell you? If so, did he give you permission to transfer his personal health...
  9. Advocate

    Trial By Error, Continued: Why has the PACE Study’s “Sister Trial” been “Disappeared” and Forgotten?

    They ignored almost 100 questions? I didn't know that. Thank you! (I'd love to know what the questions were.)
  10. Advocate

    Trial By Error, Continued: Why has the PACE Study’s “Sister Trial” been “Disappeared” and Forgotten?

    I LOVED it when David Tuller pointed out the difference between journalism and peer review to the cheeky, paid public relations specialist for PACE. Tuller's carefully researched articles have no relationship to yellow journalism--the kind apparently practiced in newspapers like the Telegraph...
  11. Advocate

    A Major Flaw in the IOM's Definition of ME/CFS

    In a public Facebook note, Danny Ze-dog addresses the flaw from many angles, and then explains how the IOM committee could easily fix the problem. The essay begins: "There is a serious flaw in the premise and design of the Institute of Medicine's new ME/CFS definition. In a nutshell, the new...
  12. Advocate

    Severe Patients’ Letter to the IOM

    @CBS, what you wrote is music to my ears: “The sad irony is that these are the very patients from whom medicine, governmental agencies, and patient advocates have the most to learn and to whom we ought to be allocating the largest share of resources. “ You, too, @Gingergrrl: “One thing that...
  13. Advocate

    Caa poll

    I hope your letter is widely circulated, too.
  14. Advocate

    The ME/CFS Stigma

    When doctotrs tell him he should try to exercise more, the very thing he is heartbroken not to be able to do., my son calls it "poking our wounds". Kauri, thank you for that analogy.
  15. Advocate

    Josie eyes Hawaiian treatment in bid for better life

    Several have expressed interest in an accounting of the money that was raised and spent by Little Acorns on behalf of Andrew McGorrian. The statement below was posted on the Little Acorns website today. I used www.unitconversion.org to convert the pounds to dollars, and added the dollar amounts...
  16. Advocate

    Jason: Minimum data elements for research reports on CFS. Brain, Behav, Immun

    Yes, I hope we can see it soon. I was encouraged by the names on the abstract.
  17. Advocate

    Could an Infection Cause Tourette's-Like Symptoms in Teenage Girls?

    Another shocking possibile explanation - fracking fluid! School and government officials are treating those sick kids the way people with CFS or ME are treated. No need to investigate further, they say, because they "know" it's hysteria. I read for the first time today (CNN transcript)...
  18. Advocate

    New WPI and CDC XMRV sequences in genbank

    Hi Currer, I just dropped in to see what people were saying about the WPI legal troubles, and was amazed to see such a lovely post about Dr Mikovits. Thank you. Advocate
  19. Advocate

    Wheelchair/Mobility Scooter Thread

    This thread has an enormous amount of valuable information in it, but here's something I didn't see mentioned--a wheelbench for those with severe orthostatic intolerance: Wikipedia has an article on wheelbenches.
  20. Advocate

    Nature: Lombardi XMRV Paper Retracted in Full

    The New York Times article on the retraction has been expanded since it was published earlier today. It now contains quotes from Mikovits, Lipkin and Whittemore. "Dr. Lipkin, who is also the director of the Center for Infection and Immunity at Columbia, said he believed the retraction was...
  21. Advocate

    News on the Lipkin study and Dr. Mikovits

    What Andrew said. And thank you, carolinetanderson.
  22. Advocate

    Site similar to PR fo Lyme disease?

    Hi Chuck, Thanks for this list. I used to visit Lymenet and Eurolyme a lot, and I'd been wondering if there are any new Lyme forums. I have checked these out and added some of them. Where do you think I could find the best discussion of the new culture that was in the news recently? Is it...
  23. Advocate

    Wikipedia entry for CFS

    Originally Posted by taniaaust1 I noticed you were there. Take care as it is in wiki rules that one isnt allowed to gather a group up to try to change things, they can ban your account for it. So as much as its all biased there and needs to be changed. We cant work on it as a group. But yeah...
  24. Advocate

    Judy Mikovits has been arrested

    People who just want their stuff back don't usually manage to send nine policemen into a friend's house to look for the stuff. (The police found nothing--no stuff.) As Mary Schweitzer commented on Hillary's blog, "This is the sort of thing reserved for child molesters, not contested NIH...
  25. Advocate

    Judy Mikovits has been arrested

    Shannah, I noticed that sentence also.
  26. Advocate

    Whittemore Institute suing Mikovits for alleged theft of lab notebooks and data

    Title of this thread makes it sound like Judy did steal lab data My duplicate post deleted by me. Advocate
  27. Advocate

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    "Michael C Snyderman, MD Hematologist, Internist, Medical Oncologist Internal Medicine Sub-specialties: Hematology & Oncology, Hematology, Medical Oncology View ABMS certification Special Expertise: Adult T-Cell Leukemia-Lymphoma Dr. Snyderman is affiliated with 4 hospitals Temple University...
  28. Advocate

    Why does 5AZA matter?

    What Mark said.