Sunday, January 2, 2011

Good News from NIH

Good News from NIH

We are pleased to announce that Dr. Dennis Mangan, with the National
Institutes of Health, has asked patient organizations for nominees of
patients to sit on the Steering Committee for the NIH State of
Knowledge Workshop on ME/CFS, scheduled for April 7-8. Among the
nominees, the NIH will be choosing at least two to serve.

PANDORA was one of the organizations approached. We then invited
input from many trusted long-time advocates and other patient
organizations. After confirming who was able to serve, PANDORA plans
to submit the following individuals as qualified candidates:
Mary Schweitzer
Pat Fero
Cort Johnson
Rebecca Artman
Brian Smith
Lee Meisel
David Adonailo
Marly Silverman
Brian Smith
Bob Miller
Alan Gurwitt

As far as we know, this is the first time the NIH has invited
patients to sit on this research steering committee. We are beginning
to see the changes we have been urging for decades.

We recommend all patients join us in commending Mangan for taking
this first step. By inviting patients to the decision-making table,
the NIH is now showing transparency and a willingness to be
responsive to patient concerns.

We look forward to more opportunities for patient influence.

Now is the time to unite.

Tina Tidmore
Communications Director

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