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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. M

    Advanced/Invasive CPET?

    I did the invasive CPET and feel like I got good data. However, they left me alone in the recovery room for a long time and I got tremendous pain from the neck catheter, which stopped when they finally took the catheter out. Lesson: always have someone with you. Back home, no one would even...
  2. M

    What Should Phoenix Rising Tell the IOM Committee?

    Tell them that everyone who did their homework to prepare for this meeting by going to the CDC website received incorrect information and should mark it as such in their notes. The CFSAC and patients have requested that it be taken down as not only incorrect but harmful, but Dr. Unger has...
  3. M

    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    I pass over long posts; I hope you will read this one, as it is the only one I'll post and offers an entirely different approach to advocacy. Eco, I empathize with your frustration and appreciate your work. Maybe, though, the failure is the medium. I haven't seen these forums instigate...
  4. M

    Opening Pandora’s Box: PANDORA Cozies up to IOM

    Hang in there, Gabby; your outrage at the political naiveté of the patients is right on, allowing themselves to be played like a harp by a government that can't afford their disease. They really seem to believe that cooperating with the enemy is the way to win a war. Is it a war? Try to come...
  5. M

    PANDORA's new position on IOM including a list of nominees for the panel

    Hillary speaks with wisdom.
  6. M

    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    Excellent letter to CAA, Justin. People seem to think the doctors' letter was about the name or the definition, but it wasn't. It was about asserting the doctors' authority to name and define the disease as they wish and as they have been doing for 10 years, and for the government to accept...
  7. M

    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    Ditto! Fool us once, their fault. Fool us for 25 years and hope we are unaware of our own history, our fault.
  8. M

    Cancer, ME/CFS...a heartfely letter by Marry Dimmock

    Mary, you have done your homework well. I hope everyone who thinks we should cooperate with the IOM reads and re-reads your lament, as you show unequivocally what a history of cooperation has produced. Your facts are correct and demonstrate to those who don't know the history of the movement...
  9. M

    A Good Night's Sleep? Not with ME/CFS

    My problem is temperature instability. Every time I wake up, it is because I am hot, whether at night or from a nap. My temperature swings between hot and cold every half hour or so, 24 hrs/day. As soon as I cool off with a fan, I can go back to sleep. Since no one can sleep if they are hot...
  10. M

    Article: Wanda Jones Talks/ CFSAC Disappoints/Agenda/Audio Call-In Set

    We desperately need Wanda to intervene at HHS to restore handicapped access to ME/CFS meetings. Wanda has always been able to get things done, and she knows that online video is a necessary accommodation for us. Dr. Lee has only responded with an unsigned form letter announcing the new...
  11. M

    Lengthy article on the NCI website about XMRV origin

    We are at the best point in our history with attention from the very top scientists in the world. People who don't understand the process feel it is their duty to voice their criticism to the world, when they should be on their knees in thanksgiving and supporting the people who are trying to...
  12. M

    Lengthy article on the NCI website about XMRV origin

    Take away the bashing of patients, organizations, top scientists and doctors, and misinformation, there might be something useful under all that. Seems more like bullies on a playground, though.
  13. M

    Lengthy article on the NCI website about XMRV origin

    You are quite right, Eric; I edited my post to say that if you read only one thing about Coffin's view, this is an excellent review in lay terms. You don't have to be a scientist to understand it. You really do have to be a scientist to present valid counterarguments, despite the pages of...
  14. M

    Lengthy article on the NCI website about XMRV origin

    Excellent article and video, not lengthy. If you read one thing on the Coffin debate, this should be it. It is science and in the language patients can understand, unlike the paranoia and false information often seen on the forums. It is only Coffin's part of the debate and Judy has her...
  15. M

    Article: Phoenix Rising Forum Moderators/Greeters Opportunities

    The value and importance of moderators was clear when Phoenix was down for several days and we looked to other sites for news. The nastiness, misinformation, bashing, paranoia - all directed at each other, scientists, organizations - wasting all that energy instead of working for the cause...
  16. M

    Speak Up About ME, INVISIBLE NO MORE! Young People with ME/CFS

    I think this is the best idea to hit the CFSAC in years! I hope every one of those kids meet the CDC reps personally and shake hands with their virally-infected little hands. I've contributed money and forwarded the link to other sources. It's a tough project, with kids sick or in school and...
  17. M

    Article: From the PCR Side: the Cooperative Diagnostics XMRV Interview with Dr. Brent Satterfield

    Excellent report, Cort; this is the way science should be discussed if the discussion is to be productive. (Wish others would learn this lesson.) We look forward to hearing Judy's viewpoint. Thanks for your effort.
  18. M

    belgian national protest action on 14th march!

    Your TV report is so inspiring! I didn't understand a word, but I cried anyway. Thanks to every single person who put forth their effort to participate.
  19. M

    The Shocking Truth

    Glad to hear someone is picking this up. Don't presume anything; include Bill Gates and anyone you can think of. Format different letters. Make them short. Keep trying. Hope many more do so, also. Imagine what the effect would be if we could refer them to the CDC? As long as CDC is...
  20. M

    The Shocking Truth

    Please excuse the repetition, but 20 years of advocacy makes it very clear that this is not an information campaign. It is a war against political will. We must completely change our thinking and our tactics and start attacking. We should be marching against Gill at the NIH meeting at 4 PM...
  21. M

    Demonstration at the CDC

    We are targeting CDC policy. I suspect the other cities might be OSHA offices, but in any case, I'd guess they have nothing to do with policy. Jimbob, where are you? We need date and purpose goals. We need you.
  22. M

    Demonstration at the CDC

    I was about to PM you, Rivka, hoping you would take the lead. We definitely do need a target date and target purpose, and soon.
  23. M

    Demonstration at the CDC

    Please don't stop thinking about this, sickofcfs, Willow Tree, and others. I lost my life because of the CDC. It is they who intentionally belittled us with the CFS moniker and psychobabble policy in 1988. That policy is even stronger today with their journal articles and website. The CDC is...
  24. M

    The Shocking Truth

    I wish I did, but I, too, have just decided to turn 180 degrees from the paper (and e-paper) creation route. I'm a scientist, and non-rational, activist approaches are not my strength - yet. But I can certainly see that we need to drastically change our thinking into activism that makes it...
  25. M

    The Shocking Truth

    I so agree, Nielk. Especially since producing paper takes so much out of us. We can't afford actions that have been tried and failed, expecting that "my" letter will make a difference when no one else's, over 20 years, did. Letters to the publishers and bloggers and newsmakers make a...
  26. M

    The Shocking Truth

    Nielk, no one would disagree one bit with any of your well-written statements. Can you say how one more document, on top of a pile of 20 years of documents, could change any of them? People keep thinking that throwing paper at CDC will make a difference, like stoning them to death with...
  27. M

    Demonstration at the CDC

    everything you said. I also am very uncomfortable with confrontation, but we have been through all the rational routes for over 20 years and look where we are - the CDC is publishing in journals and on their website that we are psych cases. Look around you in the world - political will...
  28. M

    CDC Mission Statement -- What are they doing in ME/CFS at all??

    It is the CDC that interfaces with the public and the doctors. They and the world check the CDC website - which is why we have to get that website replaced with biomedical validation. (And when they do replace it, that will be a sign of policy turnaround at the CDC. Unger can say sweet things to...
  29. M

    U. S. Department of Justice

    Crappy, you are a genius. Keep going. The HHS link was really, really surprising. This is the kind of new advocacy that can really cause a consequence. What a ruckus this will cause!
  30. M

    WE MUST Counter the Dangerous Lancet CBT/GET Article- Send this Press Release OUT!

    So true; effective journalism is what gets read. Brief statement with references is much more effective. Great letter, Cigana.