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Published on Aug 14, 2010
ME/CFS/XMRV Demo: One woman protest in Wash DC, Aug 13-14 2010, in front of the national headquarters of Health and Human Services, and, separately, the national headquarters of the Red Cross.
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Dear Health and Human Services Director, Kathleen Sebelius,
I have spend way too much of the past 20 years bedridden and homebound with Chronic Fatigue syndome, an illness with a belitting name for a disability so severe.
According to the Centers for Disease Control there are 1 to 4 million Americas like me, all sick with ME/CFS.
Every year of the past 20 yrs, I hope and hope that my government will do what a government is supposed to do, and help its people -- help me. But every year I am deeply disappointed.
The National Institutes of Health, the NIH, invests $31 billion dollars annually in medical research for the American people. But of that $31 billion, in 2009 CFS research got $5 million -- about the same as what the NIH dedicates to Hay Fever, and about a 1/3rd of what is dedicated to Psoriasis.
Now, with a newly discovered retrovirus called XMRV that is linked to -- and perhaps the cause of -- CFS, we have an even greater reason to stop ignoring the 1 to 4 million Americans who are so sick, so desperate and so in need of help.
Director Sebelius, please dedicate more money to researching CFS and the retrovirus XMRV. Dedicate more money to clinical trials so we can find treatments. And protect the Americans who have yet to get XMRV from blood transfusions, because this retrovirus is surely already contaminating the nation's blood supply.
Please help us.
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This message goes out to all people with ME/CFS: It has long been a tradition of our democracy that when a people feel their needs and concerns are not being heard by their government they will protest in the streets.
This is a tried and true tradition of any democracy.
If we can have 100s of these mini-protests, like mine, with one, two or three people happening around the country and globe, holding them in front of our government offices and our blood donation centers and blood banks, we may cause some waves, get some press attention, and get some clinical trials and funding for ME/CFS and XMRV research.
Remember, protests and demonstrations, holding up a sign in a public place stating yr views, are part of the democratic process. Let your voice be heard!