State of the Knowledge Workshop for ME/CFS at the NIH, April 7-8th, 2011

Hope123

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They do plan to webcast this workshop, speakers and agenda to come in January.
Who confirmed that the workshop would be webcasted?

I think we need to find out speakers/ agenda and then make it clear what our stance on it is if it doesn't reflect what patients and non-CDC researchers are investigating or looking at. We don't want the research agenda to be steered towards psychological issues.

In addition, there are tons of issues around ME/CFS aside from XMRV that need addressing although I can see why obviously XMRV might be one focus. For example, OI/POTS is common in ME/CFS but how many people outside ME/CFS specialists/ researchers know about it? The CDC site mentions it in passing but little info or links are given. This is in contrast to the comprehensive talk given by Dr. Peter Rowe of Johns Hopkins via the CAA. I think that talk contained more information in it than 90% of what MDs know about OI/POTS.
 

WillowJ

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why does National Institute of Mental Health need to sponsor? Why National Institute on Alcohol Abuse and Alcoholism? Why the Office of Behavioral and Social Sciences Research? Unless those are Jason-school psychologists, that's a little scary.

National Institute for Arthritis and Musculoskeletal and Skin Diseases is great. National Center for Research Resources sounds good. :) National Institute for Neurological Disorders and Stroke is very encouraging. National Institute of Environmental Health Sciences makes sense.
 

WillowJ

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and thanks much for the link, Dolphin. :D

I hadn't actually seen the CFSAC website before. All those CDC links were a bit discouraging. :(
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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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


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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.
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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.

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Send posts to CO-CURE@listserv.nodak.edu
Unsubscribe at http://www.co-cure.org/unsub.htm

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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.
---------------------------------------------