Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Article: Book Review of Elizabeth Turp's book "Chronic Fatigue Syndrome/ME"

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 31, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. CBS

    CBS Senior Member

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    Hi Jody,

    Thanks for the review. I'm always very skeptical of anyone who claims recovery. For nearly five years I was severely ill (functioning at a level of 2-3). I then managed to get myself to a much better place (typically 8-9) but as you say there was always a shadow. That better place lasted over 6 year. Had I been hit by a bus in October of 2004, I would have left this world thinking I had conquered CFS.

    Since I started to slide, the slope has been very slippery and frighteningly steep at times. To those who feel they've recovered, I encourage you to take very good care, avoid any and all potential triggers, and above all, enjoy every moment of every day that pain and disability doesn't dictate what you can and cannot do.
     
  3. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    My mouth drops every time I hear Shane's story...there is so much we don't know about this disorder...
     
  4. CBS

    CBS Senior Member

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    I was reminded earlier this evening that it would be more accurate to say that I would have left this world believing that the doctors who originally diagnosed me with CFS had, in their haste to be rid of a difficult patient, gotten it all wrong. I didn't have CFS, I actually had treatable pituitary damage and things were 90% under control with the right meds.

    To be honest, I still don't believe in "CFS."
     
  5. Nielk

    Nielk

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    What do you mean by "I don't believe in CFS"?

    You don't believe such an illness exists?
    You believe we are all suffering from different problems?
    You think it's an imaginary disease?
    You think it was just made up to accommodate complaining women?

    Please clarify,

    Nielk
     

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