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

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Search results

  1. Liz Willow

    Crawley: Natural course of CFS/ME in adolescents

    Medscape is a much more general source than the original journal. Primary care physicians who don't have the time to keep up with every speciality are more likely to read the article now.
  2. Liz Willow

    Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

    No. I started taking it 15 years ago. With age, my blood pressure increased and the fludricortisone caused hypertension. I tapered off the drug recently and luckily haven't had much of a problem with NMH to date. Before I went non fludricortisone, I was unable to sit up for more than 15 minutes.
  3. Liz Willow

    Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

    I tested positive on two separate occasions via tilt table testing. Beta blockers either did nothing or I couldn't tolerate the side effects. I finally convinced a doctor to prescribe fludricortisone. It made tremendous difference in my life until recently.
  4. Liz Willow

    I met Senator Ted Cruz yesterday 10/17/15 shook his hand as well

    Check out some of the fact sheets and letters to Congress drafted by www.MEadvocacy.org. Perhaps @caledonia or @Nielk could point you in the right direction.
  5. Liz Willow

    Congress proposes to slash CDC's ME/CFS budget to zero

    My point is that this Senate report has no impact on what CDC is required to do (or restricted from doing) for "CFS". Only specific language in legislation, if passed (and thus turns into law) can do that.
  6. Liz Willow

    Congress proposes to slash CDC's ME/CFS budget to zero

    No. You are wrong. It is only Congressional legislation, which, if passed, that is legally binding. The zero budget recommendation is in the Senate's report which accompanies the actual appropriations legislation. The legislation (or "bill") does not make any references to CFS. This is...
  7. Liz Willow

    Congress proposes to slash CDC's ME/CFS budget to zero

    Please note that this deals with suggested funding (and therefore is not legally binding), and at the CDC only (NIH funding is not affected). It does not have an impact on overall CDC funding. CDC can always find money in its budget to study specific diseases if it wants to. A good analysis...
  8. Liz Willow

    The CDC is soliciting an RFI for broadcasting promotion of CFS

    The last time the CDC came up with a PR campaign we got glossy, airbrushed photos and PSAs showing a tired woman trying to juggle a family and career. The PSAs must have been shown at midnight as few people I know ever saw them. Google "CDC Faces of CFS" for images and check out this 2006 CDC...
  9. Liz Willow

    NIH Seeks Public Input on Strategic Plan

    In response to at request from Congress, the U.S. National Institutes of Health (NIH) is developing a 5-year strategic plan which will, among other things, set research priorities based on burden of illness. Public input is requested. The deadline for comments is August 16th. Read more at...
  10. Liz Willow

    Simon Wessely in New Scientist

    SW tweeted 6 hours ago, "No shift. any promising treatment, be it CBT, GET or rituximab, needs a big trial. First two have them, third not yet" This speaks for itself.
  11. Liz Willow

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    Attendance at the briefing was by invitation only and the location was kept secret.:cautious:
  12. Liz Willow

    Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

    @Sasha, #MEAction has, indeed, set up something that makes it easy to send King's blog to Congress. Because links are often considered potential viruses, they are often not opened by Congressional staff or members. #MEAction suggests copying and pasting the text of the blog into the...
  13. Liz Willow

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    I agree. I find the comments posted on the first petition especially interesting. Click here to read comments on the earlier petition.
  14. Liz Willow

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    The earlier petition most certainly embarrassed the CAA and led to some changes. It was delivered at a CFSAC meeting by a public commentator. Plenty of people heard about the petition and the number of signature it received. The organization came out with a statement around that time entitled...
  15. Liz Willow

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    By the way, this petition is a follow-up to an earlier one closed four years ago. It's worth reading the comments people left when they signed. Discomfort with the CAA/SCMI is not new, and it doesn't appear the concerns expressed on this forum at the time nor in this petition have been...
  16. Liz Willow

    Sign petition to HHS stating CAA/SMCI does not represent "our voice".

    There is a long history of dissatisfaction with the CAA/SMCI. The recent announcement that SMCI will hold a Congressional briefing caught many off-guard. Given the organization's embracement of the IOM report, those of us who have problems with it are justifiably nervous that SCMI will use its...
  17. Liz Willow

    HHS already spruiking the benefits of CBT and GET

    From the P2P draft panel report; https://prevention.nih.gov/.../ODP-MECFS-DraftReport.pdf. The numbers refer to the lines in the report. "In many cases, lack of instructions or 136 guidance for including graded exercise therapy often causes additional suffering, creating fear of 137 harm from a...
  18. Liz Willow

    It's Time to Stop Preaching to the Choir

    Years and years of us ill patients trying to make our voices heard has had little impact on public perception. Readers and viewers of patient blogs and videos tend to be other patients. We must stop preaching to the choir! Read more at...
  19. Liz Willow

    CFSAC Meeting Scheduled for January 13, 2015

    @halcyon -- what happened: During the December CFSAC meeting, a Working Group was set up to compile comments to the P2P panel report. It appears that this Working Group's draft was edited and influenced by at least one HHS staff member, the DFO (Designated Federal Official) for the CFSAC...
  20. Liz Willow

    Thoughts About M.E.--FACA Request: Did HHS Orchestrate CFSAC’s P2P Comments?

    A huge thanks for holding the Feds' feet to the fire regarding these clear legal violations, Jeannette!
  21. Liz Willow

    The Call for Opposition: Challenging the P2P and IOM Processes

    Your analogy of POWs who form an attachment to their captors and those within our community who mistake the P2P and IOM initiatives as "not too bad" is very apt. Decades of abuse have made many blind to the fact that government action has not and will not bode well for us. Those who want...
  22. Liz Willow

    The P2P Draft report is out

    Jerrold Spinhirne has written an excellent comment criticizing the P2P report. It's available as a Google document which makes it easy to share. Jerry has submitted this as a public comment to the January CFSAC meeting. https://drive.google.com/file/d/0B4uD-VyWmIw2b1pXMzZOZWVUUE0/view?pli=1
  23. Liz Willow

    Protest IOM P2P: Advocates Eileen Holderman & Jeannette Burmeister sending letters of protest to HHS

    There is widespread dissent to what the U.S. government is doing to ME! Others are commenting on the substance of the report. We must counter their voices! But hurry. The deadline for comments is 11:59 Eastern Standard Time, today, October 20. A protest comment can be pasted in the "General...
  24. Liz Willow

    Protest the P2P! Deadline 11:59 pm EST!

    There is widespread dissent to what the U.S. government is doing to ME. Others are commenting on the substance of the report. We must counter their voices! A protest comment can be pasted in the "General Comments" section of the AHRQ form. There is no need to enter anything in the other boxes...
  25. Liz Willow

    First IOM meeting scheduled - Jan 27-28

    Keep in mind that the last name change movement that stuck (started by Rich Carson in 2008) and resulted in "ME/CFS" being used has backfired. The idea was to get the historical background and definitions of ME recognized and used. Instead, ME has been subsumed into "CFS". I'm stating this...
  26. Liz Willow

    Tweeting campaign in support of the letters of 50 experts and 171 advocates

    Hi Wally, The committee leaders that would be most helpful are Senators Harkin, Murray, Alexander, Mikulksi, Shelby, Sanders, and Burr; and Representatives Upton, Kingston, Pitts, Pallone, DeLaura, Rogers, and Lowey. You'll find some of their twitter addresses (plus those of some additional...
  27. Liz Willow

    Tweeting campaign in support of the letters of 50 experts and 171 advocates

    I am not a tweeter, so I don't know if it is possible to point these Members of Congress in the right direction via a tweet. The best way they can help is to reach out to their colleagues on the appropriations and authorizing committees for HHS. HHS must hear from these committees’ leaders.
  28. Liz Willow

    Tweeting campaign in support of the letters of 50 experts and 171 advocates

    Here's another blog post to add to your tweets (regarding Secretary Sebelius' non-response to the experts' letter): http://thoughtsaboutme.com/2013/11/28/sebelius-responds-to-the-experts-you-mean-this-is-not-what-you-wanted/
  29. Liz Willow

    Tweeting campaign in support of the letters of 50 experts and 171 advocates

    Please add this url to your tweets: http://tinyurl.com/oh8btde It will direct the recipient to Mary Dimmock's guest post on OccupyCFS: http://www.occupycfs.com/2013/11/27/which-disease-is-hhs-studying/