Topics unrelated to the Baha'i Faith
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Joined: Wed Dec 31, 2003 12:12 pm


Postby brettz9 » Thu May 26, 2016 1:26 am

Hello friends,

I would kindly request friends here consider speaking up or putting in a word on social media for the voices of those of us with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) who lack the energy to do much to promote awareness of our own neglected condition. I recommend #MillionsMissing, a creative campaign to draw awareness of the condition.

ME/CFS is a poorly understood condition in which one is afflicted with an exhausting fatigue which is akin to having run a marathon (or for those of us who have never done that, to going out shopping and on demanding errands all day, and coming home ready to flop on the bed, yet then being expected to start your day). There are also serious concentration difficulties and other problems that can go with the condition.

U.S. government funding of the illness is a paltry 7 million, despite being a very debilitating disease (with many bed-ridden or needing frequent bed rest, and costing billions of dollars in lost productivity) affecting an estimated 1 to 2.4 million people in the U.S., all the while far less serious conditions get more funding (6 times more in the case of male pattern baldness).

I have waited year after year to see some compassionate action be taken, vainly hoping that the situation would change with the painfully slow but progressing state of research, e.g., this study from Columbia speaking of strong evidence for its biological basis or this important document from the prestigious National Academy of Sciences, Institute of Medicine, describing the illness as "a serious,
chronic, complex, systemic disease" and recommending the condition be renamed to Systemic Exertion Intolerance Disease. (It has been observed that calling it "Chronic Fatigue Syndrome" is like calling Alzheimer's "Chronic Forgetfulness Syndrome" where everybody could say, "Yeah, I have that sometimes too!") Yet the federal budget remains at this soul-crushingly low amount.

Since we are too sick to fight for ourselves, I hope you may at least just put in a word to bring attention to this condition.

And while I have posted this in the non-Baha'is issues section of the forum, I think Baha'i friends and friends of the Faith ought to be pretty sympathetic of a terrible plight which gets scant media coverage despite its seriousness while frivolous issues get no end of coverage.

Best wishes,

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