• 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.

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

Search results

  1. M

    TELL HHS THAT YOU OPPOSE ANY EFFORT TO REDEFINE ME

    UPDATE: The first paragraph of the sample email has been changed. In addition, it would be helpful to use the subject heading, "Stop Your Attempts at Redefining ME" in the emails. Thanks to all participating in this campaign! Dear Secretary Sebelius, I understand that HHS has...
  2. M

    Dr Klimas's CDC talk on deconditioning & exercise in ME/CFS on Cort's blog

    I just listened to Dr. Klimas’ webcast of the seminar held at her new clinic. Among others, Dr. Peterson was there. He politely told Dr. Sol that he found his patients hit their AT at 90 seconds, and that was usually while engaging in activities of daily living. Thank you, Dr. Peterson.
  3. M

    The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

    Nancy-Ann DeParle has resigned from her position in the White House. So much for the "Obama Promise". http://www.foxnews.com/politics/2013/01/12/deputy-chief-staff-deparle-leaving-white-house-to-join-brookings-think-tanks/
  4. M

    Make Room on Your Calendar 20 Dec for the Live Webcast of the FDA Ampligen Hearing

    Here's a good article that puts the FDA report in context. As the writer states, "The problems facing Ampligen-or any putative therapy for CFS for that matter, is that the underlying cause(s) are unknown. As a result, there are quite possibly distinct sub-groups within any potential CFS study...
  5. M

    Dec 20th: High Noon for Ampligen! FDA Advisory Committee Decides Ampligens fate in live webcast

    Here's a good article that puts the FDA report in context. As the writer states, "The problems facing Ampligen-or any putative therapy for CFS for that matter, is that the underlying cause(s) are unknown. As a result, there are quite possibly distinct sub-groups within any potential CFS study...
  6. M

    Florinef Questions

    Florinef has helped me. It took a while to take effect, so be patient. I would give it at least a month's try. While this drug helps keep people with OI vertical, it does not claim to help with exercise intolerance. I'm afraid this key symptom is much more difficult to address. Pacing...
  7. M

    In depth autoimmune testing - what to ask for??

    Hi Esperanza, Can you get a referral to a rheumatologist? Lupus and less well-known autoimmune diseases are treated by rheumatologists in the US. These specialists also have training in immunology and a decent one should be able take the results you already have and dig deeper with...
  8. M

    Need a electrocardiologist for POTs in VA

    Check out http://www.cfsnova.com/p-brain.html#Cardiology
  9. M

    Now that CFSAC's over, what should we do?

    Please do consider the proposals in the context of how they would help or refine The Joint Request for ME/CFS Action. Feedback can be sent to mecfsaction@yahoo.net. Here is another link to the Request...
  10. M

    Now that CFSAC's over, what should we do?

    It will be a long and difficult road to travel, but I think we need to get Congress to charter a new CFSAC that reports back to Congress. That way a separate branch of government would have oversight power of the Committee. The HHS Secretary could not constantly ignore CFSAC recommendations...
  11. M

    Now that CFSAC's over, what should we do?

    The Autism and Alzheimer's Advisory Committees are more powerful than the CFSAC because they were created as part of legislation to fight both diseases. In each case, these committees are charged with implementing the law and must report to Congress. Congress has no authority over CFSAC, which...
  12. M

    Join us for Patrick's Memorial Service (conference call on May 6, 2012)

    Reminder: Sunday, May 6, 3 pm EST ...for anyone who wants to join in the conference call memorial service for Patrick.
  13. M

    MOMS ON A MISSION Contest--$5,000 prize/matching $5,000--Help Dr. Peterson's research

    Less than six hours left to vote! Less than 6 hours left to vote. $5000 for neuro-immune disease research is at stake in this contest, to be matched if NIDA wins. If you've already voted, please share this on your FB page...
  14. M

    CDC scheduling conference to discuss changing case definition (said at CFSAC)

    CDC announced it would be developing yet another case definition last October. :Retro rolleyes: I kept hoping they simply decided not to proceed with this project. :headache:
  15. M

    NIH Change Leaves ME/CFS Program With Acting Director

    You're welcome Gemini. And yes, Webb is the NIH rep.
  16. M

    NIH Change Leaves ME/CFS Program With Acting Director

    Dr. Charles Webb is taking over Dr. Dennis Mangan's responsibilities for ME/CFS (at least temporarily).
  17. M

    Next CFSAC meeting date has been announced for November 8, 2011

    Anyone who wants to make the following comment to the Federal officials in charge of ME/CFS policy (including several members of the CFSAC plus others who will give presentations) can do so by signing the following petition...
  18. M

    PETITION for AN APOLOGY RE: ME/CFS (to Assistant Sec.of Health)

    With CFSAC meeting, this is a great time to send a message to the Federal officials making ME/CFS policy. Signing will generate an email asking for increased and targeted NIH research funding as well as CDC changes to its website to eight different government officials, including several at the...
  19. M

    PETITION for AN APOLOGY RE: ME/CFS (to Assistant Sec.of Health)

    Remember, every time someone signs, emails are sent to seven different federal officials. The text asks for increased NIH research funding as well as changes to the CDC website along with an apology. We have 456 signatures as of now. Let's bug Assistant Secretary Koh, CFSAC Designated Federal...
  20. M

    PETITION for AN APOLOGY RE: ME/CFS (to Assistant Sec.of Health)

    Here's the link again: http://www.change.org/petitions/apologize-for-not-responding-appropriately-to-the-mecfs-epidemic Please sign, please share with others if you've already signed. :Sign Thanks:
  21. M

    PETITION for AN APOLOGY RE: ME/CFS (to Assistant Sec.of Health)

    I just wanted to set people's mind at ease about petition privacy issues. Change.org collects email and snail mail address info to make sure you're human. However, the only thing the recipients of the petition and even the originator of the petition sees is your name. And if you're queasy...
  22. M

    PETITION for AN APOLOGY RE: ME/CFS (to Assistant Sec.of Health)

    This is the message that will be sent to Secretary Sebelius and six other health officials when you sign: Greetings, I just signed the following petition addressed to: Kathleen Sebelius, Kathleen.Sebelius@hhs.gov. ---------------- Apologize for not responding appropriately to the...
  23. M

    Next CFSAC meeting date has been announced for November 8, 2011

    Write Dr. Lee and demand the resumption of live videocasting of the meeting! There is a Facebook Event asking people to email Dr. Nancy Lee and others. The CFSAC meeting has been videocast live for the past three years. It is an accommodation for disabled people who cannot attend the...
  24. M

    The ME (ICC) vs CFS (Fukuda) Diagnosis Poll

    There is a dire need for research on well-defined patient cohorts and the ME ICC selects such cohorts. Research to date on, say, the same pathogen has been difficult to compare because of the overbroad case definitions in use to date.
  25. M

    The ME (ICC) vs CFS (Fukuda) Diagnosis Poll

    Keep in mind that the ME ICC authors will be putting out Physician's Guidelines which will include more detailed diagnosis information, helpful tests, and a symptom severity scale. The ME ICC will also be discussed at the upcoming IACFS/ME conference in Ottawa. I expect these events will...
  26. M

    Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

    If you have a Facebook account, you can post the petition as a link. Just copy the petition link: http://www.change.org/petitions/patients-against-the-nomination-of-dr-suzanne-vernon-to-the-cfsac Then click the "link" button under your Facebook "share" box, paste the link in there, and it...
  27. M

    Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

    Exactly! The CAA has been represented on the CFSAC for many years, and the CDC has a standing member on this committee. We don't need more of that. Please sign and/or share the petition: http://www.change.org/petitions/patients-against-the-nomination-of-dr-suzanne-vernon-to-the-cfsac
  28. M

    Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

    Hi Andrew, Khaly will make sure the petition gets to the CFSAC one way or another. Dr. Nancy C. Lee is the Executive Secretary of the CFSAC and coordinates it currently. She is part of the Office of Women's Health at HHS, which has its own Facebook page, https://www.facebook.com/HHSOWH...
  29. M

    Please SIGN PETITION AGAINST the NOMINATION OF SUZANNE VERNON for the CFSAC

    Signed, shared, etc. I do not want the co-author of the Reeves' CDC CFS definition on this Federal advisory committee.
  30. M

    CAA Announcement: Putting Research First

    Sign the Petition From Kim's statement in the March CFIDSLink newsletter: In other words, the CAA will still be advocating, and the people they will talk to will still think this organization represents the patient population and its research priorities unless we tell them otherwise...