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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Blog: Thank You To Our ME Experts

Discussion in 'Institute of Medicine (IOM) Government Contract' started by slayadragon, Oct 6, 2013.

  1. slayadragon

    slayadragon Senior Member

    >Our experts have taken a brave and trailblazing stand for ME patients by agreeing, in an open letter to Secretary Sebelius, on an official definition for “ME/CFS,” the Canadian Consensus Criteria (CCC). This is what Secretary Sebelius has been asking for, a consensus on the disease definition coming from the medical community. It’s here now. When HHS entered into the IOM contract to produce a case definition, it was not aware that our experts had already agreed on one. Therefore, the only reasonable response from Secretary Sebelius to the open expert letter is to rescind the IOM contract, as the experts strongly urged, and to use the about $ 1 million dollars in tax-payer money set aside for that contract where it is much more urgently needed and far more efficiently utilized: for bio-medical ME research.

    >Our experts deserve our deepest gratitude for uniting and standing up for us in this monumental way and, maybe even more importantly, for not wavering in the face of unrelenting, if subtle, pressure from the CFIDS Association of America and most likely other powers that be to change their position. That has taken some real integrity. We are witnessing a truly groundbreaking moment!

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