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The American Fibromyalgia Syndrome Association
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Research
$220,000 RECEIVED IN CONTRIBUTIONS DURING 1998
AFSA's annual fund-raising drive, plus a personal letter produced by Fibromyalgia Network, generated $220,000 in donations—the most that AFSA has ever raised in a given year! With this generous outpouring from patients who are already feeling the financial burdens of a chronic illness, we hope to fund several projects this year. Half of your donations were allocated to the superior quality projects mentioned in this UPDATE, but the remaining half will be put toward drug trials to help you feel better ASAP.
Too many people with fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS) are finding that the most commonly promoted therapies don't help nearly enough. Pain, fatigue and other symptoms often persist, which is a frustrating and sometimes devastating predicament. The pharmaceutical companies are not interested in FMS and CFS because there is no diagnostic marker and the physiological basis behind the many symptoms is not understood. These are the very reasons why AFSA is looking at "commissioning" drug trials to at least minimize symptoms until scientists get a better handle on what's causing them.
Four Projects Funded by AFSA ... and more to go!
In June of this year, AFSA funded four excellent research studies on FMS and CFS, which totaled $108,000. A description of these studies is provided in the Research page of this website. With the remaining $112,000, AFSA intends to fund additional projects and will publish a description of these studies later this year.
AFSA's President Rebuttals "The FM Problem"
Several letters to the editor appeared in the May 1998 issue of Journal of Rheumatology, all in response to previously "damaging" editorials that were printed in July of 1997. Here is a brief excerpt of the published letter by AFSA's president, Kristin Thorson:
"...The American Fibromyalgia Syndrome Association has raised over a quarter of a million dollars (all from the generosity of patients) over its three year existence and has directed it toward research. Patients are serious about wanting to feel better and stay employed with the benefit of therapies supported by research. For once, I can agree with the nay-saying physicians and the insurance/disability industry. No one wants "the fibromyalgia problem"—but at least the patients are stepping up to the plate to take the necessary measures to alleviate it!"
