Journal of IiME Volume 3 Issue 1 www.investinme.org Letter from America By Maary Schwweitzer The Current Situation in the U.S. These are exciting times for patients in the United States. The presidential election represented a significant shift in policy towards medicine, treatment, research, and the plight of the neglected. In December, the Obama-Biden transition team asked for community meetings to discuss health care issues. A small group of us “met” online and produced a report on ME/CFS. One community report from every state was chosen for the White House’s new website for Health Reform – and ours represents my state of Delaware: http://healthreform.gov/communityreports/d elaware/delaware_19711.html. It has already been read by Senators, Congressmen, and members of the executive branch. The research group IACFS/ME met in Reno, Nevada, in March, with most sessions devoted to international biomedical research. The new Whittemore-Peterson Institute in Reno is already bearing fruit using the tools of molecular medicine. Dr. Nancy Klimas noted how exciting to see such diverse research presented in a cooperative, not competitive, fashion. April 27, the U.S. CDC held a hasty stakeholders’ meeting on their new 5-year plan for CFS and “fatiguing illnesses.” The Obama administration was, we believe, unprepared for the vehement response. Person after person testified to the consequences of having been rendered invisible by CDC’s adoption of the name and concept of “chronic fatigue syndrome.” Invest in ME (Charity Nr. 1114035) Mary M. Schweitzer, Ph.D. Mary Schweitzer from Delaware, USA, was a tenured professor of history before being disabled with ME in 1994. Mary has been an active and very passionate advocate for people with ME for several years writing articles and taking part in the CFSAC (Chronic Fatigue Syndrome Advisory Committee) meetings to allow the patient's voice being heard. For four hours patients, advocates, and a few physician/researchers called for the immediate end of the current CDC program on CFS. Consensus is building towards the goal of subgroups identified through objective biomedical testing, funding for treatment, and the establishment of Centers of Excellence as we have for cancer. If CDC cannot help, then we want them to step out of the way. Written comments on the CDC’s 5-year plan can be sent from inside or outside the U.S. through June 30. See the website http://www.cdc.gov/cfs/meetings/2009_04.ht m. On May 27 and 28, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) within Health and Human Services will hold its first meeting under the Obama administration. We are all hopeful that the entire approach to our disease will change, particularly regarding NIH and CDC. Page 49/76
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