• 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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Search results

  1. Ember

    Beware of Aiding in the Burial of ME!

    Would “all the researchers that are currently studying ME/CFS” quit en masse because ME patients want them to use our research definition? Before they were ignored almost five years ago, our experts wrote, “The expert biomedical community will continue to refine and update the case definition as...
  2. Ember

    Beware of Aiding in the Burial of ME!

    You"ve quoted Nielk above, who wrote: And you've countered: Please recall, if you will, this statement: “We strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop ‘clinical diagnostic criteria’ for ME/CFS.”...
  3. Ember

    Beware of Aiding in the Burial of ME!

    Isn’t CFS an inclusion term under ICD-10 Diagnosis Code R53.82? According to Dr. Bateman, calling the IOM definition ME “would have created even more confusion:”
  4. Ember

    David Tuller NEW crowd funder has 500 less donations than last year so far

    Thanks for letting me know. I've asked that the link in my post be disabled, as it's too late now for me to edit. You might want to disable the link in your post as well.
  5. Ember

    David Tuller NEW crowd funder has 500 less donations than last year so far

    David Tuller about an hour ago When I launched this year's crowdfunding campaign with a goal of $75,000, I wrote that I hoped to exceed that target, as happened last year. The extra money, I wrote, would go toward travel expenses and/or to increase my Berkeley position slightly above 50 %. Now...
  6. Ember

    David Tuller NEW crowd funder has 500 less donations than last year so far

    6 days left Project ends on April 30, at 11:59 PM PDT Give Now “If I overshoot my goal—and I hope I do, as I did last year—the additional funds will be used to increase my compensated time beyond 50% and/or to cover more travel costs. I would be delighted to be able to spend more than half my...
  7. Ember

    David Tuller NEW crowd funder has 500 less donations than last year so far

    Suddenly: $74,591 99% Raised toward our $75,000 Goal 821 Donors
  8. Ember

    In Memory of Bob: A tribute from his friends

    I remember Bob’s sense of accomplishment when he saw that he had notched 10,000 posts on Phoenix Rising! Take a look at his post and others commemorating that happy occasion. Mark suggested that Bob be considered a ‘hero member:’ :rocket::star:
  9. Ember

    Dr. Klimas compares GWI and ME/CFS, decries low ME/CFS funding

    Back in 2013, Dr. Broderick described alternate resting states found in males suffering from GWI and CFS. He presented pilot data suggesting that, as a persistent state, CFS is quite far removed from the ones that occur naturally. “You would need an external force to keep you at that attractor”...
  10. Ember

    First Canadian ME conference, May 3-5 in Montreal

    Dr. Gordon Broderick, a native Canadian, made these hopeful comments back in 2013: In the same year, Dr. Broderick described alternate resting states found in males suffering from GWI and CFS. He presented here pilot data from a 4-year, $4-M effort integrating computational and animal models to...
  11. Ember

    Pineapple fund--donation to OMF increased to $5 million!

    Thank you Pineapple Fund for delivering hope to millions...
  12. Ember

    Pineapple fund--donation to OMF increased to $5 million!

    The fifth million is also shown to have transferred: Received Time 2018-02-07 11:16:41
  13. Ember

    Pineapple fund--donation to OMF increased to $5 million!

    https://www.reuters.com/article/uk-bitcoin-philanthropy/anonymous-bitcoin-philanthropist-donates-5-million-to-medicine-foundation-idUSKBN1FM2G4
  14. Ember

    Discovery Forum 2017 (SMCI): Presentation by Dr. Ian Lipkin

    Some quotations:
  15. Ember

    Transcript & audio of Nov. 28 NIH telebriefing now available

    Rebecca Taurog argues, “You’re saying the science drives it and we’re not getting enough good grants to fund in ME/CFS, but we all know that there are grants that are not being funded that are by top scientists (54:30 – 54:45).” Amid the obfuscation, this telebriefing highlights some...
  16. Ember

    Llewellyn King interviews Dr. Lipkin: ME/CFS Alert, Episode 95

    Dr. Lipin’s projection seems to confirm Dr. Klimas’ comments here: She adds:
  17. Ember

    Llewellyn King interviews Dr. Lipkin: ME/CFS Alert, Episode 95

    Dr. Lipkin comments on his involvement and on funding levels:
  18. Ember

    What are seminal studies in ME research?

    Here’s a shorter version: “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness provides a literature review based on over 9,000 studies. It concluded that ME/CFS is a multi-system disease often preceded by an immune challenge.” The IOM report also provides criteria...
  19. Ember

    What are seminal studies in ME research?

    The description of the Institute of Medicine Report does include this accolade: “A panel of experts reviewed over 9,000 separate studies to produce it.” That’s what led me to offer information for a parallel introduction.
  20. Ember

    What are seminal studies in ME research?

    The sections of the #MEAction summary highlight metabolism, exercise, neurological and immunological findings. In addition to the IOM report, the “General Information” section might mention the ICC considering that it defines ME as a complex disease involving profound dysregulation of the...
  21. Ember

    Dr. Klimas compares GWI and ME/CFS, decries low ME/CFS funding

    Dr. Klimas frames the funding problem as one of portfolio management: The NIH, by contrast, provides no apparent mechanism for clinical trials: “So where are we in ME/CFS? You know, you’re looking at this thing and you’re saying: ‘Our NIH RFA is nice. It’s all about pathogenesis and what are...
  22. Ember

    New blog - CDC’s Staged Call

    The only thing that changed when Dr. Unger took over from Dr. Reeves was the tone: Dr. Unger was setting her own stage back then.
  23. Ember

    plan for no cure and hope you're wrong

    Your doctor suggested that you’d found something sufficiently motivating to get you out of bed? ME patients can generate lists of activities that they’re motivated to perform. And they can tell you what happens when they try. Just as you did. Congratulations on surviving your doctor’s ignorance...
  24. Ember

    Dr. Klimas compares GWI and ME/CFS, decries low ME/CFS funding

    According to Dr. Naviaux, cellular miscommunication patterns maintain ME, GWI and some autoimmune diseases: The systemic signalling errors described here do seem eerily analogous to “false illness beliefs,” i.e., danger responses in need of a reset. Meanwhile, we suffer the mistaken assessments...
  25. Ember

    Rituximab Phase III - Negative result

    Try this: THE INTERNATIONAL CONSENSUS CRITERIA What is it? Do I fit the criteria? Posted by MEadvocacy Advisory-Committee 5sc on October 29, 2016
  26. Ember

    Rituximab Phase III - Negative result

    Maria writes, “Perhaps there are subgroups within the Canadian criteria? However, the criteria are useful as a way to compare results from the different studies" (Posted on November 21, 2017 by Maria Gjerpe.) Shown graphically here, the ICC is narrower than either the CCC or Fukuda. And the ICC...
  27. Ember

    Dr. Klimas compares GWI and ME/CFS, decries low ME/CFS funding

    The “Climbing the Mountain” slide, along with the graphic showing altered signalling pathways, suggests that a “snap out of it” remedy is being applied to a systemic “false illness belief.” Aren’t autoimmune diseases maintained by similar systemic "false illness beliefs?"
  28. Ember

    Complex Chronic Disease Program (CCDP) Patient Engagement Findings

    For me, CCDP support in terms of counselling, nutrition (no referral), info, etc. was hugely disappointing. But I appreciated the medical attention. Initially, I was taken to be a responder to immunovir; later I was started on iron supplements and LDN. Then I was discharged, despite a notation...
  29. Ember

    New blog - CDC’s Staged Call

    After almost three years, the research expected to fix the SEID criteria has failed to materialize: CDC foot-dragging, aided and abetted by Dr. Unger’s multi-site study, is such a disgrace! Let’s recognize the refinement represented already by the ICC.