Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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THE DEVIL MADE HER DO IT--Mindy Kitei takes on Jennifer Spotila of the CAA

Discussion in 'Action Alerts and Advocacy' started by Dreambirdie, Mar 2, 2011.

  1. Dreambirdie

    Dreambirdie work in progress

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    Check it out. http://www.cfscentral.com/

    "Jennifer Spotila, even if I had been on hallucinogens, I couldn’t have said something as unhelpful as what McCleary told CNN."
     
  2. cigana

    cigana Senior Member

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    How infinitely better are Mindy's example comments for the media compared to McCleary's?!
     
  3. Dreambirdie

    Dreambirdie work in progress

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    "Kim McClearly could have told CNN something like this: “The PACE trial is problematic, and here are some reasons why. The selection process eliminated most bona fide CFS patients. Instead, the PACE patients had idiopathic fatigue and depression. Cognitive behavioral therapy and graded exercise therapy are primarily helpful for those with idiopathic fatigue and depression, not those with Chronic Fatigue Syndrome. In fact, the hallmark of CFS is post-exertional crashing, so graded exercise therapy would make the symptoms of most CFS patients worse.

    “Many patients with CFS are severely ill and suffer from seizures; swollen lymph nodes; fevers; autonomic dysfunction that makes it difficult or impossible to sit or stand; heart failure; immune dysfunction, including reactivation of herpes viruses; and rare cancers. Some patients are dying, others are consigned to a living death, and compelling evidence points to a newly discovered retroviral infection in these patients that’s similar to the one that causes HIV.

    "Despite its trivial name, this is not a trivial disease. To suggest that patients can power through CFS through GET or CBT would be as incorrect as suggesting that those with Parkinson’s disease or multiple sclerosis or AIDS can be restored to health simply with exercise and a positive attitude.”



    Yes! Excellent! Mindy makes her point clearly and succinctly... and she does not apologize for telling the truth.
     
  4. *GG*

    *GG* Senior Member

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    I am not very familar with the PACE trial, but I wonder how true this statement is: "The selection process eliminated most bona fide CFS patients. "

    I know there are various definitions and some are very weak! I take most to mean >50%, so if that is true, this study is very poorly done, no matter how many millions of pounds they spent! My understanding is that about 25% of ME/CFS patients are bedbound, so you can exclude the worse of the worse!

    GG
     

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