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Somethings gotta be done; money, lots of it was spent on XMRV but the budget for the rest of CFS is still in the tank and now we are faced with what we worried about what might happen if XMRV didn’t turn out; the rest of the medical community going on as if nothing happened…
Usually Workshops such as the State of the Knowledge Workshop for ME/CFS come with major grants. That didn’t happen for us. Instead we heard that the NIH would decide about a major grant for CFS at the end of the year when the Lipkin study was done but the Lipkin study is apparently lagging behind and every day it does so let’s ME/CFS fade from the scene a bit more.
Session after session our CFSAC reps have been been pressing the case for more funding to no avail. The upshot is something needs to be done to wake the Feds up. and something is…
A demonstration to protest the chronic meagerly, abysmal, (evil) -use whatever adjective you wish – underfunding of chronic fatigue syndrome – is going to happen outside the Holiday Inn on Nov 8th. Bob Miller – the same Bob Miller who made his way into meetings with top NIH officials, and collared NIH Director Collins, and spoke to Vice President Biden, and whose wife got Pres. Obama on camera to promise to look into ME/CFS funding – is leading it.
It will be videotaped and presented on Phoenix Rising as live as we can make it.
This is a physical and virtual demonstration. As the demonstrators protest on will likely be some cold sidewalks in DC we’ll be pumping in emails and faxes to the officials who make up the budgets.
Stay tuned – there’s more to come.
The Demonstration Outline from Bob is below. (Please email him if you have ideas or which to participate at bobmiller42@msn.com)
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ME/CFS Patients Advocate for Patients :
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On Nov. 8, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) will demonstrate against 25 years of neglect by the National Institutes of Health and the U.S. Centers for Disease Control. The demonstration will greet members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) just before they begin their bi-annual meeting at the Washington-Capitol Holiday Inn starting at 9:00 am.
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Patients unable to attend CFSAC can be with us via the Web:
Make your own signs, shirts and Banners then post pictures on your own Facebook Page, on this page and on Bob’s Facebook page.
We will update you with video from CFSAC as possible, Watch for updates on the websites that will be posting video.
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Contact via email the representatives from DHHS listed below starting after 5 pm on Nov.7th Eastern and by Nov. 8th. by 8 am Eastern, so we will have their undivided attention at the meeting.
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nancy.lee@hhs.gov;
howard.koh@hhs.gov; and at ash@hhs.gov;
wanda.jones@hhs.gov;
kathleen.sebelius@hhs.gov;
francis.collins@nih.gov
afauci@niaid.nih.gov
cc to me at hebs1reel@yahoo.com to track the numbers
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Those that are able to attend will do our part. We know you will Stand with us?
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Together we will move science forward, United We Stand, Divided We Stay home for another 25 years. So get your signs ready.