Tuesday, May 12, 2009
Awareness Day Walk/Candlelight Vigil
Tonight, an intrepid group of CFS and fibromyalgia patients, despite their pain and fatigue, walked, limped, crutched and rolled around the California state capitol, representing the 10 million people with fibromyalgia and at least 1 million Americans with CFS. As they walked, they read out the names of 800 fellow patients from around the world who had e-mailed that they were unable to attend but were with us in spirit. Hundreds of lit candles were placed on the steps of the state capitol, representing the many patients who could not attend.
CDC and NIH combined allocate at most $6M a year to study a disease that they estimate affects 4-7 million Americans (more than AIDS, breast cancer and lung cancer combined; and more than 10 times as many people as have MS). This works out to about $1 per patient per year – compare that to $35/patient for epilepsy, $70 for autism, $250 for MS, and a whopping $650 per patient for cancer!
Lynne Matellana, of National Fibromyalgia Association, revealed to a round of cheers that the government has allocated money for fibromyalgia research, but that we have to keep after Congress to make sure that it is spent, and is spent properly. Lynne advises that photos and videos will be available at the FMAware.org website tomorrow.