• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. W

    MEAdvocacy.org call for rejection of the IOM report in Washington Post blog

    Please read the article a bit more carefully, please. It does not say the entire community has a single opinion on anything. Indeed, a good half or more is simply history and the views of both sides are presented (both are brief because the article was brief). The first thing it does say is...
  2. W

    Demonstration tomorrow at 11:00

    DEMONSTRATE! (please share widely) There will be an ad hoc demonstration tomorrow (Jan 27, 2014) against the IOM contract and the HHS’s refusal to accept the CCC. We will start protesting at 11:00 AM at the Judicial Square Metro Station (600 Fifth Street, NW Washington, DC 20001). I will be...
  3. W

    Prednisone for sore throat and CFS

    The immediate taper you're given is not a problems, as others have said. On the other hand, DO NOT EVER consent to a "standard" 10-14 day course. I did that for an asthma attack and it hooked into my CFS. It took me three years (yes, years) to get off the crap since no one (including CFS...
  4. W

    When do you know you are ready to go back to work (full-time)?

    I'd second the idea of volunteering for at least several months. I don't mean a few hours a week, I mean a full 40 hours each week, every week. Running doesn't simulate the workplace, doing a job at a non-profit may. If you can successfully handle going to "work" day-in, day-out for a...
  5. W

    Is life worth living with this?

    Easy work around: copy the post, paste into Word (or other similar program), add spacing. Voila. Brainfog compliant text!
  6. W

    CDC New Chronic Viral Diseases Branch Chief

    If Unger proves Reeves in sheeps' clothing, I'd love to see a campaign like TFA aimed at Sebelius. Ask her to just pull the CDC's funding entirely and give it to an agency actually working on the problem. I hate the idea of a single research dime being up for grabs but the CDC "research" has...
  7. W

    CDC New Chronic Viral Diseases Branch Chief

    I agree that stating what we would like Unger to do immediately would give her a chance to show her colors. Number 1 on my list is to get that website pulled down immediately and then rewritten to reflect the full research basis of ME/CFS. The current website is biased beyond belief. As...
  8. W

    Article: A Man From Whom Viruses Cant Hide - Chang Lee/The New York Times on Dr. Ia

    What a scary statement!:Sign eek: Lipkin is very good but he isn't God. If he can't find it, it means that HE can't find it with HIS current technology, not that it doesn't exisit! Fauci's ready to throw in the towel based on one researcher's luck??? No wonder CFS research languishes!
  9. W

    What Happened to the Washington Residents XMRV Study Thread?

    Actually, it was pulled temporarily. The lab was just putting out feelers and they got swamped by the response. The study details are still being worked out, then it will be formally launched. Keep your eyes peeled.
  10. W

    The XMRV tree

    JPV, would Francelle's idea be more palatable to you if "Roots said something like "underlying cause or infection" instead of XMRV? The picture certainly seems otherwise valid and concise (kudos!). I agree XMRV as the root is currently speculative, though there are excellent reasons to...
  11. W

    The XMRV tree

    danny -- maybe not. This is really discussing the conceptualization of ME/CFS as a whole, not XMRV (except as part of that whole).
  12. W

    Physiological cost of walking (Rafferty, Marshall, 2009)

    Willow, thanks for the great summation and compilation of research on exercise and pacing. I'd read most of these before but putting them in one place amplifies the findings. Singularly, I wouldn't bother bringing these abstracts to my doctor. Together, I will because they provide a clear...
  13. W

    Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

    I've got to believe the email/fax/phone campaign to Director Collins was involved too. If we continue to speak loudly and collectively, I think we can do more. My vote is to completely closed down the CDC's failed program (especially it's "new" website, which is so bad as to be deceptive)...
  14. W

    If you test XMRV-, but have M.E. with immune dysfunction.......what then?

    As for taking the sample to FedEx yourself, check your state. You can't do that in Washington (I asked) and I know New York has restrictions on blood via mail and courier, too. But labs (at least big ones) send blood out to specialized testing facilities all day, everyday. Ask the lab if they...
  15. W

    Culture Positive but Serology Negative

    They got my blood 9/22 and said this week that the serology should be sent to my MD end of next week (11/19?). You've got a few weeks yet. :-(
  16. W

    Culture Positive but Serology Negative

    This is off-topic but... Cloud, could you please change your avatar to one that doesn't move? My ME-brain can't read what you wrote when it's in my field of vision. I know other ME's have the same problem. Thanks.
  17. W

    Merck: L-000870812

    There are only 3 phases, though it isn't unusually to have multiple trials at any phase. Often drugs are sent back for more testing as questions arise during the approval process. As for how long, well, don't hold you're breath. "Fast-track" easily can take much more than a year (and has to...
  18. W

    Article: The 'Time For Action' Campaign: the Next Phase

    Actually, I rather like the snarky comment (though that's not my usual style). Says it like it is. As for "might be new" and "doesn't fully know," well, if the man hasn't had the sense to educate himself on the history and issues of his new responsibility, and if he hasn't bothered to read...
  19. W

    Start at the Top (Call for Action campaign)

    The Call to Action campaign has shown writing can get the attention of people with real power to change things. But asking Mr. Collins to change the CDC or Dr. Frieden to change the NIH won't work -- it's like asking Bill Gates to change BP Oil Co. (wrong CEO, no can do!). But if we ask people...
  20. W

    Article: Compadres in Scarcity: Patterns Emerge in the Bottom of the Barrel at the NI

    NIH Funds $423,500 Study of Why Men Don't Like to Use Condoms That's bad enough -- but at least you can see knowing facts might change outcomes there. Today I saw reference to several studies on "ice cream headache" and why it only occurs in summer. Geez. If they need somewhere to spend...
  21. W

    Article: Compadres in Scarcity: Patterns Emerge in the Bottom of the Barrel at the NI

    I understand the frustration of the gentlemen about having a "woman's disease." It is shared by my male friends with multiple sclerosis. About 3/4 of sufferers of ME/CFS are female (the study is Jason's but I don't remember the exact numbers). That's the same % as with MS and rheumatoid...