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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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  1. S

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    Hi Bob - we revised the information on our Online M.E. Centre some time ago and do not cite a 30% recovery rate. Best wishes, Sonya
  2. S

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    Hi Esther - I have read and digested the information that has been produced from the various PACE papers. I absolutely hear what you say about your expectations of me and the and of Action for M.E. As I stated earlier, we are not currently going to take any further actions. I accept that this is...
  3. S

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    Hi - I do not have access to any of the data (and have never seen any of the data) from the PACE trial and therefore cannot share it. I do understand the concerns that people have raised and the reason for the scepticism and lack of trust of Action for M.E. A key focus for us now is to turn...
  4. S

    Action for M.E. - Placing Patient Views at the Heart of a New Research Strategy

    Hi - I hope the following responds to some of the points that have been raised in the posts and hope that it's ok to pull them all into one post rather than respond to each individual post: Action for M.E. supported the PACE trial because we believed that it would provide the NHS and other...