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    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.

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Search results

  1. pwme_92

    A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

    This is an excellent point; it would be interesting to compare results when exposed to other stressors (as mentioned by the original poster)
  2. pwme_92

    My first appointment with Dr Susan Levine

    @nryanh94 thanks for the excellent summary!
  3. pwme_92

    The biopolitics of CFS/ME (Karfakis)

    :lol::cool::trophy:
  4. pwme_92

    The biopolitics of CFS/ME (Karfakis)

    I can't say I disagree with your assessment, out of curiosity, I emailed the author to try and begin a dialog, I'm very curious to hear his viewpoint. (And, yes, I did ask about the delay in publishing the findings from when it seems as if the primary research was completed ... I'll report back...
  5. pwme_92

    The biopolitics of CFS/ME (Karfakis)

    https://www.sciencedirect.com/science/article/pii/S1369848617300705?via=ihub (See below for a link to download the complete paper) https://www.s4me.info/threads/the-biopolitics-of-cfs-me.4546/ Related thread (and note the comments about some of the dated findings in the following paper)...
  6. pwme_92

    Dr. Ron Davis gets NIH grant!

    Thanks @wigglethemouse, I didn't know about that site before. Great share.
  7. pwme_92

    Seeking Respondents -- MECFS Initial Diagnosis and Health Indicators Survey (est. time 15 to 30 min)

    Thank you for your feedback, I have changed the date of onset question per your suggestion.
  8. pwme_92

    Dr. Ron Davis gets NIH grant!

    Very, very, V-E-R-Y exciting; though I'm not having much luck tracking down more information on the web (Cort must have gotten a scoop).
  9. pwme_92

    Seeking Respondents -- MECFS Initial Diagnosis and Health Indicators Survey (est. time 15 to 30 min)

    Sure, with some caveats: This is a summer Health bioinformatics class and in no way, shape, or form should the fairly quick project I turnaround be taken or construed as a "serious" or "meaningful" academic paper (or study) That being said, this is a dry run (of sorts), ideally, I would love...
  10. pwme_92

    Seeking Respondents -- MECFS Initial Diagnosis and Health Indicators Survey (est. time 15 to 30 min)

    Thanks to everyone who has completed the survey so far and for this thread. To note, this is not a rigid survey or sampling from a statistical/methodology point of view; while I initially conceived of tracking US patients' responses and experiences within the American health system, feel free...
  11. pwme_92

    My first appointment with Dr Susan Levine

    Thank you so much for sharing your experience and please keep us updated as your treatment progresses.
  12. pwme_92

    Seeking Respondents -- MECFS Initial Diagnosis and Health Indicators Survey (est. time 15 to 30 min)

    I am a PwME (since 1992) and current IT grad student seeking respondents for a survey. While the survey is not endorsed by Phoenix Rising, the Moderation Team has given me permission to post it. The survey can be taken anonymously and there are no "cookies" and/or other identifying information...
  13. pwme_92

    CFSAC Meeting June 20 -21 2018 Announcement

    @Wally, I couldn't agree more and it is *not* intuitive to access the proceedings. However, I may be able to provide a bit of insight after working in similar environments (NSF, USAID) for some years now to provide communications channels to the public. Short answer I'd wager a bet that some...
  14. pwme_92

    CFSAC Meeting June 20 -21 2018 Announcement

    Update, presentation is live now. I will also share out an archived recording (though you may need to register with NIH to access that). Currently, Mathew Reinhard (co-chair along with Nancy Klimas) is sharing out information about the NIH-VA Gulf War Illness Deep Phenotyping Study
  15. pwme_92

    Dr David Tuller: An Open Letter to The Lancet, Two Years On

    :fire::fire::fire:
  16. pwme_92

    All of Dr David Tuller's blogs listed here

    Thank you for tracking and sharing!