Two posts from the Co-Cure Listserve mailing list:
29 December 2010
Jill McLaughlin
[CO-CURE] NIH State of the Knowledge Steering Committee
Dennis Mangan has contacted Marly Silverman to solicit nominations for patient advocates to the NIH State of the Knowledge Steering Committee. Pandora is a state org regardless and many do not support their national policies or politics. The CFIDS Association are nonetheless a national group, though they have not posted anything either so they cannot be counted on. There is relatively so little overall support for any of the patient orgs, and especially the new spinoff "ME/CFS" groups/advocacy which would influence the speakers and agenda, it is most important for a free flow of information. So more cronyism, whereby Pandora can line up their nominees well ahead of time and stack the deck. It is time that we demand that gov't agencies set up their own list serves or post info on their website so that the community has equal access to the information at the same time, not preferential notifications of certain select groups or individuals.
We need to demand equal opportunity and access for the entire patient community. This is not acceptable.
Contact:
"Mangan, Dennis (NIH/OD) [E]"
dennis.mangan@nih.gov
Jill McLaughlin
---------------------------------------------
Send posts to
CO-CURE@listserv.nodak.edu
Unsubscribe at
http://www.co-cure.org/unsub.htm
Too much mail? Try a digest version. See
http://www.co-cure.org/digest.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------
30 December 2010
Tina Tidmore editor@claynews.net
[Co-Cure] ACT: PANDORA's submission of candidates for the NIH State of Knowledge Workshop on ME/CFS
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- . 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
PANDORA, Inc.
---------------------------------------------
Send posts to
CO-CURE@listserv.nodak.edu
Unsubscribe at
http://www.co-cure.org/unsub.htm
---------------------------------------------
Co-Cure's purpose is to provide information from across the spectrum of
opinion concerning medical, research and political aspects of ME/CFS and/or
FMS. We take no position on the validity of any specific scientific or
political opinion expressed in Co-Cure posts, and we urge readers to
research the various opinions available before assuming any one
interpretation is definitive. The Co-Cure website <www.co-cure.org> has a
link to our complete archive of posts as well as articles of central
importance to the issues of our community.
---------------------------------------------