A sufferer of ME/CFS for 20 years, Rivka went to Washington, DC, along with her mom, to raise awareness and get attention for research funding for ME/CFS. Here is Rivka’s message that you will hear in the video below:
Message to Kathleen Sebelius
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 Syndrome, an illness with a belittling name for a disability so severe.
According to the Centers for Disease Control there are 1 to 4 million Americans like me, all sick with ME/CFS.
Every year of the past 20 years, I hoped and hoped that my government would 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 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 one-third 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.
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 demonstrate and protest.
This is a tried and true tradition of any democracy.
If we can have hundreds of these mini-protests, like mine (of one, two or five people), happening around the country and globe, 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 your views – are part of the democratic process. Let your voice be heard!