• 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. W

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

    Well said, Wayne! I could not agree more. This is a very positive new chapter for Phoenix Rising. It's the first website I actually joined as a member since contracting ME 20 years ago, with Health Rising being the second website. I recall immediately being impressed by the tenor of the in-depth...
  2. W

    An ME Patient Writes a Touching Tribute to Cort Johnson on ProHealth - his loneliness with ME/CFS banished after coming across an article of Cort's

    This ProHealth article popped up on my google alert for "chronic fatigue syndrome" -- a wonderful tribute, by ME/CFS patient Michael Cuthbert, to a wonderful person. Newer Phoenix Rising members may be unaware of the history of its founder, Cort Johnson, and the website dating back to 2004...
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    Canada's Minister of Health: special livestreamed announcement about ME Thurs Aug 22 at 2pm (EST)

    Here's a Montreal news outlet's article (thanks again to a fellow advocate): https://montrealgazette.com/news/lo...-million-to-research-chronic-fatigue-syndrome
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    Canada's Minister of Health: special livestreamed announcement about ME Thurs Aug 22 at 2pm (EST)

    Thank you to anyone who watched the livestream. At one point, there were 408 viewing. Thanks to a fellow advocate, here's the press release from the Canadian Institutes of Health Research: https://www.canada.ca/en/institutes...le-living-with-myalgic-encephalomyelitis.html
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    Canada's Minister of Health: special livestreamed announcement about ME Thurs Aug 22 at 2pm (EST)

    Canada's Minister of Health will be making a special announcement about ME on Thursday, 2pm Montreal time (EST). You will be able to watch the announcement on live stream here: https://livestream.com/CHUSteJustine/events/8789125 If you are able to join the livestream, it will help show the...
  6. W

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

    @Cort just interviewed Ron Davis and Rahim Esfandyarpour here: https://www.healthrising.org/blog/2019/05/07/threading-the-needle-nanoneedle-scores-big-in-first-me-cfs-test/
  7. W

    what's the followup to the biomarker study that was just published (Spring 2019)?

    @Cort just interviewed Ron Davis and Rahim Esfandyarpour (the lead author) about the paper here: https://www.healthrising.org/blog/2019/05/07/threading-the-needle-nanoneedle-scores-big-in-first-me-cfs-test/
  8. W

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    @Cort just published an article on this topic today: https://www.healthrising.org/blog/2019/02/27/brainstem-compression-chronic-fatigue-syndrome-me-cfs-fibromyalgia-pots-craniocervical-instability/
  9. W

    Cort was just video-interviewed on his personal experience with ME/CFS by Dan Moricoli

    Cort was just video-interviewed on his own experience with ME/CFS by Dan Moricoli (cfsKnowledgeCenter). Check it out (8 minutes) here: https://vimeo.com/282305907 I believe the resulting video is true to form -- very personal and honest -- as he describes when he first got sick 38 years ago &...
  10. W

    In Memory of Bob: A tribute from his friends

    @Graham, *You* were a truly wonderful friend to *him*. Thank you to you & @Countrygirl & @Gingergrrl & others who tried so very much to help him. What a terrible loss. As for the despicable & ignorant treatment he received at the hands of the U.K. health system, I am appalled. It is terrifying...
  11. W

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Plus, he said if you were in the audience, he'd like to meet you, @ballard! Wonderful cartoon.
  12. W

    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    Does anyone recall the email address shown on at the start of the symposium for questions? Thanks.
  13. W

    NIH RFA announcements and Feb 1 NIH teleconference

    Yes, they said both recording and transcript will be posted next week
  14. W

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    As a follow-up, on a Health Rising thread about the honours (http://www.healthrising.org/forums/threads/cort-johnson-david-tuller-to-be-recognised-by-the-iacfs-me.5040/), @Hello on Health Rising re-posted this pic of Cort and Linda Tannenbaum tweeted by the OMF:
  15. W

    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    Our PR Founder @Cort & David Tuller each just won service awards @ IACFS/ME conference!!! They both deserve this recognition so very much!!
  16. W

    IACFS/ME conference in Fort Lauderdale, Florida on October 27-30

    I look forward to seeing you all there! If people want to, maybe write your PR name on your badge so we know who each other are.:)
  17. W

    IACFS/ME conference in Fort Lauderdale, Florida on October 27-30

    Yes, I am - who else is going?
  18. W

    Washington Post article on Toni Bernhard's latest Psychology Today column (Oct3/16)

    Yes, I had the same impression but perhaps -- giving her the benefit of the doubt -- it was meant to be a supportive comment (the ever-present narrative of ill/disabled people who "push through" and "triumph against the odds"). Otherwise, it comes across as disparaging. However, there is also...
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    Washington Post article on Toni Bernhard's latest Psychology Today column (Oct3/16)

    Courtesy of the Toronto Star: https://www.google.ca/amp/s/www.thestar.com/amp/life/health_wellness/2016/10/03/the-upside-of-being-in-chronic-pain-for-15-years.html?client=safari
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    Dr. Kathleen Kerr, Scientologist

    I echo what @Dufresne has written. As we all know well, many doctors are dismissive and disbelieve ME patients; others simply are not ME-literate. Dr. Kerr is a fully ME-literate physician who has cared for – and continues to care for – many patients – including ME patients -- over dozens of...
  21. W

    Links to media coverage of the Naviaux study (Aug 30, 2016)

    Has Huffington Post, New York Times or Washington Post written about it yet?
  22. W

    Discouraging News for Canadian ME Patients

    The link is not working for me today -- can others access it ok? Edit: never mind, I typed it directly (instead of clicking on the link) & now it worked.
  23. W

    A long-standing friend and member of PR has died through lack of medical support

    @Countrygirl I am so sorry for your loss. What happened to him is so very, very sad. Good on you to speak up for him, both before he died by suicide & now again to help him get some justice for the system's outright negligence.
  24. W

    Anyone recognise this rash/welts around navel?

    I would wonder if it could be shingles, except I think it would be painful if it was. Might consider trying some B1 & see if it decreases.
  25. W

    Dr. Oz June14/16 segment on "chronic fatigue" & "chronic fatigue syndrome": the good & the bad

    Edit: I just noticed something I completely missed while watching the segment yesterday -- the show's title. Brace yourselves. The title is: "Do you have Chronic Fatigue? The Real Reason You Have No Energy - Reasons for exhaustion; foods that fight fatigue..." So, this title is firmly in the...
  26. W

    Dr. Oz June14/16 segment on "chronic fatigue" & "chronic fatigue syndrome": the good & the bad

    Dr. Oz featured a segment on "chronic fatigue" again today. --> The good: The show differentiated between "chronic fatigue" & "chronic fatigue syndrome". At about the 13 min mark, she mentions a recent Swedish study with 12 female patients who "had CFS, not just chronic fatigue" & had...
  27. W

    Interesting article about post-concussion persistence:note the similarity to ME

    Interesting article about post-concussion symptoms --and their long-term & debilitating persistence in some concussion patients. The symptoms & QOL effects of concussion are remarkably similar to those of ME -- I wonder what the common pathways are...
  28. W

    Mold "Expert" Pugliese Under Investigation

    @Ifish, thank you for posting this. Those poor patients -- just awful.
  29. W

    CFSAC webinar 17 & 18 May 2016

    I am interested in watching today's meeting, but I just can't tie up my phone all day. I may see if I can pop in & out.