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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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  1. Ever Hopeful

    Article About CFS and Genetics

    Interesting article- however please take with caution because James Jones of CDC fame was one of the authors!!!
  2. Ever Hopeful

    An Alarming Symptom

    Don't want to scare you, but I had this happen after I developed ME and thought it was just my ME flaring or maybe an asthma attack happening for the first time. It worsened in me and turned out to be massive pulmonary embolisms. Very scary - you may want to get that checked out.
  3. Ever Hopeful

    My leg gave out

    Jemal - I had the same feeling you did in my left leg also - it lasted about 6 hours where it felt like I was walking in space on my left side - I held onto the walls and crawled so I didn't break anything that time, thank God! I think it is sooo weird that the left leg seems to be the problem...
  4. Ever Hopeful

    Wessely and M.E

    Hysterically funny!! I think this is what could be called true ME humor because only our community (plus certain physicians and insurers) would understand it, but it is good enough to be published someplace like "The Onion". Thanks Quilp - you made me really laugh today!
  5. Ever Hopeful

    Its lawsuit time . . .

    Count me in, too! Selling exercise equipment I can now only dream of using sounds like a great way to raise some extra cash for the cause :) !! EH
  6. Ever Hopeful

    1st International Workshop on XMRV 7-8 September 2010

    Walid Heneine ATLANTA, GA US 1. 20100160420 NOVEL SIMIAN T-CELL LYMPHOTROPIC VIRUS - Disclosed are the simian T-cell lymphotropic virus type 3 subtype D isolated nucleic acid molecules encoding 06-24-2010 2. 20080292657 PRIMATE T-LYMPHOTROPIC VIRUSES - Disclosed are compositions and methods...
  7. Ever Hopeful

    Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

    I was very pleased to see Dr. Vernon's response to this article. I attended a meeting a couple of years ago where she was a presenter and was very impressed with her. I was the last person (from the public) to speak with her privately after the meeting. I watched her patiently and...
  8. Ever Hopeful

    Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the U.S.

    We could hold a contest for prizes for the most creative pillowcase, most moving, funniest, brightest, biggest, smallest, wildest, etc. by posting them before we send them on the big day.
  9. Ever Hopeful

    Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the U.S.

    How about we nominate Judy M, Annette W and Hillary Johnson for CNN's Hero award?? Make it a triple award. We could make a t-shirt with their faces across the back with a saying on the front "Ask me who my heroes are?"
  10. Ever Hopeful

    T Shirt Ideas for Fundraising

    Has anyone thought of selling Weaselly voo-doo dolls complete with pins for a mighty fine and fun fundraiser?? Better than a t-shirt any day - now maybe he can feel some of our pain! LOL
  11. Ever Hopeful

    Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the U.S.

    I think everybody needs to throw an idea in - here's mine. How about a coordinated effort at 2 of the major news stations (CNN and ABC?) where a video is mailed with XMRV and ME info and everyone mails the news stations a pillowcase with how many years they have been sick and bullet points of...
  12. Ever Hopeful

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    I'm not feeling very good today, so if this comment is redundant or just super obvious pardon me, but did anyone else notice on slide 27 (the 1st un-numbered slide towards the end of the presentation) that it lists XMRV as a prioritized EID threat as of August 2009 and also says "The only...
  13. Ever Hopeful

    Chronic Pain Campaign website

    Pfizer has an indication for Lyrica for fibromyalgia - I would assume behind the scenes they are very interested in what role Lyrica could play with ME/XMRVers at some point. It's all about the dollar and stock price! But hey- if it gets them pumping research money our way - more power to "em!
  14. Ever Hopeful

    *2 new* letters, Myra McClue, Annette Whittemore

    This is my first post besides introducing myself, but after reading some of this thread I felt I had to put my 2 cents in, too. I really agree with Shebacat's reply. I wanted to add to this discussion because I really depend on Gerwyn's "translation" of complex medical studies/theories. I also...