FMS and CFIDS/ME are at the bottom of the list for research. Yet, it is a fact that not only do these patients suffer more pain then similar illnesses, they are also more disabling. -- MS gets $60 million a year in government funding for 300,000 American adults. According to the National MS Society, "The majority of people with MS do not become severely disabled." (from: www.nationalmssociety.org) -- Lupus gets $60 million a year in government funding for 1.4 million American adults. 20% of people with lupus are unable to work or go to school. (from: www.lupus.org) -- CFIDS gets $6.7 million a year in government funding for 800,000 American adults. 43% of CFIDS patients are unable to work or go to school. (from: www.cfids.org and materials from the CFIDS Association of America). CFIDS affects more women than breast cancer, lung cancer, or HIV infection." Fibromyalgia gets 13.7 million a year in government funding. People who have died from CFIDS fall into two groups. The first, are those that commit suicide from the pain. There is a small percentage of us that live in levels of pain that I don't think is comprehensible to anyone. I know, as I am one of them. That is why I have devoted pain referrals on this web site. The other group, are patients whose immune systems have become so compromised they have passed away from a CFIDS related complication. The National CFIDS Association has started a memorial list in honor of these patients. To visit this memorial Click Here To learn more about CFIDS, Please read "Stephen's Story" from the movie "I Remember Me" Click Here |
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| There is only one way to get the research we need. We must ask our government representatives to make FMS/CFIDS a priority. Since the general public is not familiar with these illnesses, neither are those that make research budget decisions. We must persistently and relentlessly write them so they understand why it is so important that these diseases deserve to be put on the front line for research. Two organizations that lead the way to help us become part of this advocacy effort are R.E.S.C.I.N.D. and The CFIDS Association of America. For example: At R.E.S.C.I.N.D.'s web site, you can easily locate your state representative by entering your zip code, or copy a pre-written letter, learn the proper format to send you own letter, and even e-mail your representative directly from their web site! Click Here The CFIDS Association of America's web site provides extensive information on the process our government goes through to decide who gets reseach money and how much will be designated. Visit their site to order advocacy packets and to keep updated on advocacy news and awareness campaigns. Click Here |
| What We Must Do Together To Find A Cure |
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| Research |
| The Government Neglect of FMS/CFIDS |
| & Advocacy |
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| Only Together, By Taking Action, Can We Find A Cure |