Friday, May 9, 2014

May 12: A Disease Gets Its Day, but Who Cares?

They are angry — often too angry to be persuasive — that ME is not on the national radar. They are angry that after more than three decades, the federal government is still seeking to define the disease, which afflicts about 1 million people here and 17 million worldwide; that research funding, at $5 million, is so low that in the world of Washington expenditures, you practically need an electron microscope to find it; and that the suffering goes on unmitigated. They are angry that the government, through the Centers for Disease Control, abandoned the old name, Myalgic Encephalomyelitis, in favor of the dismissive new name, Chronic Fatigue Syndrome. They believe this trivializes the disease, and favors those who want to define it as a psychological affliction rather than a real disease. They are angry that distinguished researchers, like the virus hunter Dr. Ian Lipkin of the Columbia University Medical Center, has had to resort to crowdfunding to continue his work that might help ME patients.
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Just a reminder -- if you're going to communicate with someone in authority, "angry" can often get you classed as "mentally ill", which is an assessment we're trying to avoid.

1 comment:



"Over the past 9 years, after opening my private foundation, I got the White House to open an investigation, Senator John Kerry to forward my case to the head of the CDC, and the U.S. Global AIDS Coordinator to forward my case to the NIH/NIAID.

Amongst other things, my blood has been to the CDC-Atlanta (twice) and to the Washington-DC pathology labs. I have sat on conference call with the American Red Cross. Facilitated by the United Nations, I have been out of the USA (twice now) to meet with a Nobelist and his colleagues to provide blood samples.
I have come to appreciate that what that doctor told me 9 years ago (i.e., "nobody cares") is probably true, but my response to him is this:

"Just because the world may not care about me, does not mean that I do not care about them. I no longer fight for me; I fight for you. I will keep writing letters because I fight for humanity.

Thank you."