For some years now, we've been sending letters to our elected officials, to arrive around CFS/Fibro Awareness Day, May 12.
At the very least, please write to your two Senators and your Congressional representative; if you can afford more stamps, start at the White House and work your way down to your City/County Council.
A one-page letter should do it -- who were you before, who are you as a result of the disease, how long did it take for a correct diagnosis, how does it affect your life, the difficulties you had getting people to believe you and your Disability benefits (or that you still haven't received them even after years of waiting), and then the zinger, that this affects a million Americans, $24B a year in lost productivity, so when is the government going to invest enough in research to get us back to work and paying taxes on that $24B? If you're a friend or caregiver, talk about your loved one, how it hurts you to see this once-vibrant person bedridden or in a wheelchair, "Mary used to run marathons and now can barely manage ten steps from bed to bathroom without collapsing", "Jim used to lift weights, 300 pounds was nothing, and last week I had to spoon-feed him because he didn't have enough strength to lift the food to his mouth".
The point is to have a sudden "blip on the radar" as for one week there are all these letters coming in about CFS/fibro. Elected officials do keep track of what issues are generating a lot of mail and they pay attention to those. If we can go from the usual 0-1 letter a week up to 12 or 20, it will be noticed.
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