• 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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  1. J

    Rich Van Konynenburg, a photo montage

    Thank you so much for sharing this, Diana. Like "determined", I am finding it hard to come onto the forum these days, and really appreciate your thoughtfulness in sharing with us during what must be such a difficult time for you. I never had a direct contact with him, but read all of his...
  2. J

    What about inherited immune deficiencies?

    It would certainly be a tribute to him. I wonder if this forum could approach some of the well-known research entities with a request that they consider immune deficiency markers. It may be that the studies that have taken vials of blood from some of us could look into immune deficiency...
  3. J

    Goodbye

    Nielk-- I mostly read here, but rarely post... but know that I have always appreciated your insights. I wish you well, and hope to see you back. peace and blessings, J
  4. J

    Calling all News Activists:FDA studying vaccines as vectors for retrovirus

    In addition to Amy J., send an email with a link to major health writers or health section editors in all major print news organizations (Post, NYT, etc), alternatives (Salon, Huffington Post, Nation), periodicals (Times, Newsweek, CSMonitor), as well as broadcast (radio/TV--NPR, Frontline, 60...
  5. J

    Dr. David W. Gregg, Ph.D. has died.

    Rich-- Sorry for the loss of your good friend and colleague. He sounds like a creative thinker; thank you for letting us know about him. That is one way to pay tribute to your friend. Take care, J.
  6. J

    Comment by 'jewel' in 'lessons learned'

    Thanks, aciendaze-- I will need to read, and reread this, to get the details, i appreciate your blogging on this. It begins to help me understand some possibilities beyond the dichotomous "contamination/infection" stances. Please keep blogging (energy permitting, of course). J.
  7. J

    Comment by 'jewel' in 'My Letter to the APA'

    Beautifully written. Thank you. J
  8. J

    Comment by 'jewel' in 'From My Commonplace Book - 23'

    Merry-- Thank you for this, and for all your postings and "Commonplace Book" blogs. If I need to reconnect with the human spirit (through print), you blog posts are my quickest route. J
  9. J

    TO RICH: HAPPY BIRTHDAY and THANK YOU...

    Happy Birthday and a wishes for a wonderful year ahead. with appreciation, J.
  10. J

    No one REALLY gets it

    Nielk-- So sorry to hear this! I've come to the conclusion that people cannot handle "chronic" anything in others. They are better with acute; even if they are overall loving, caring family members they habituate to another's disability or illness so that it becomes background. I have friends...
  11. J

    how old are you?

    Heck, SaveMe, my kids blame me for just about everything (teens), depending on the day! So, why not? My mom had a lot of undefined, bothersome illness symptoms, and I sometimes wonder if I inherited a predisposition for this from her... J
  12. J

    Will the real depression please stand up

    For years, I tended to have days and weeks of feeling perfectly healthy in the summer months.. and inevitably, when this happened, I would think, "Ah, I'm over this! Yay! and I would begin to energetically plan for all of the things I would be doing." And, of course, I would "crash" whether then...
  13. J

    48 hours left to give feedback on PSAs

    #2 also. Wasn't able to vote or register on the linked website, but am hoping you can get the infor this way also. Thanks, Tina (et al.) for the work. J
  14. J

    guillain barre syndrome, cfs???

    My mother died of sequelae from Guillain Barre... Basically, in Guillain Barre, there is some sort of autoimmune process (often after an infection or vaccine) whereby the myelin sheaf to the nerves is attacked causing pain, difficulty in coordination, and a rapid paralysis over a period of...
  15. J

    Feb 2: Alan & Kathleen Light speaking in Salt Lake City, Utah

    Thanks so very much, Shane! Do the Lights have a way for the public to donate as WPI does?
  16. J

    reasoning about sequences and algorithms

    This is fascinating; thanks for the explanation.
  17. J

    A Plug for Coverage for CFS and XMRV on my local public radio program Forum on KQED

    Thanks for this. Posted to the link also asking for more coverage on this topic. Take care, J.
  18. J

    KDM Statement On Recent Publications

    Thank goodness! The study of blood recipients and donors will be very interesting, as will the others mentioned. They can't come out soon enough!
  19. J

    Has Anyone Seen Dr. Kogelnik?

    Thanks so much!!
  20. J

    Eecp

    Thanks for this information, David. I hope your daughter continues to do well. The high school years are challenging enough without adding the burden of a poorly understood chronic illness to the mix. J.
  21. J

    Has Anyone Seen Dr. Kogelnik?

    Hi Julie-- Thanks for posting. Noticing that that was post #1, welcome. I was wondering if you could elaborate a little about what his coherent theory is and approach. I would love to find someone whom I could get in to see without traveling across the country (or state). Take care, J.
  22. J

    Should a CFS female have a baby? Should she go on antiretrovirals during pregnancy?

    This is an incredibly difficult, personal decision. I have two kiddos, now teens. I can't imagine my life without them. I am also, though, less severely affected than many. So, if I knew then what I know now, would I have had them? I don't know.... I am waiting to get back results from a...
  23. J

    Erithromycin, Azithromycin, Clarithromycin

    I always feel almost immediately better on azythromycin. Never had clarythromycin. I've been on azythromycin for acute URI/sinus or UTIs. The docs have never been willing to give me zithromax for a period of months for cfs/fms symptoms... even if due to anti-inflammatory properties, I sure...
  24. J

    PMRV joins XMRV as possible etiologic agent of chronic fatigue syndrome

    Thanks for posting. It is heartening to see that the science is being taken seriously enough that these are the considered next steps : " conduct extensive case-control studies in North America…using coded samples from subject inflammatory disease to determine the frequency of MLV infection in...
  25. J

    Other organizations

    Good point, such as the Leukemia and Lymphoma Society.
  26. J

    Photos of Healthy People Rubbing Eyes in Current News Articles - Give Feedback

    Thank you! My goodness! This is not "sleepy young one rubbing eyes" syndrome, or "itchy eyes" disease... aargh! J
  27. J

    POLL: Does the NUDITY in my CFS video offend anyone?

    Ha-- I had to watch it again, this time closely. I also did not notice the nudity the first time around, just the words, message, and, in an impressionistic way, how the images support the meaning. I certainly do not think it is offensive. Just art. Take care and thanks for the laughs...
  28. J

    new empowher article: "Chronic Fatigue Syndrome: Weathering Upcoming Fall And Winter"

    Jody-- Thanks for pointing out how functioning can vary depending on weather, which in turn seems mediated by other factors (geography, a person's individuality). I do better in warm, dry weather, and I am lucky to live in a climate that provides such weather most summers (not this one, alas, a...