The following message to the ME/CFS community was posted Oct 23 on the Co-Cure Listserv.
Important Meeting of the CFS Advisory Committee on Oct. 29-30 in Washington, DC. www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
The CFS Advisory Committee makes recommendations to the Secretary of Health and Human Services regarding government-based CFS research, funding and programs. This is a critical meeting because the future of $25 million in public funding for CFS research at the Centers for Disease Control will be discussed.
IACFS/ME wants these funds to be spent on cutting edge biomedical research leading to objective diagnosis and treatment of CFS. We also want CFS to become a public health priority so that issues of stigma and the absence of good medical care are addressed.
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The new CFS retroviral study on XMRV in the top tier journal Science shows what can be done to advance the medical research. But this is only a first step. Without follow-up, the momentum we now have will be lost. Only with broad based support from the professional and patient communities will we have a voice in how federal funds for CFS research are spent.
What we need is strong attendance at the CFSAC meeting.
If we pack the house (we have to fill only 50 seats), that will show that we care about this illness and support all appropriate biomedical research and public policy initiatives that legitimize CFS. If you can attend for even 2 hours that would be helpful.
Fred Friedberg, PhD
Note: HHS tracks the number of people viewing the live videocasts of CFSAC meetings to gauge our interest. So if you can't attend in person, you can still be counted! For details on the timing of key presentations and testimony – and instructions on how to get connected, click here.