# Ask your representatives to support CFSAC letter



## M&M (Jan 20, 2002)

Posted to the Co-Cure list:************************************Ask your representatives to support CFSAC letterFrom Mary Schweitzer, Ph.D. <marymsch###comcast.net>NOTE: Feel free to copy this to anyone, anywhere.Recently there was a letter urging us to write our Congressional delegations,asking that they support a letter which 13 Representatives from the U.S. House of Representatives wrote to the Department of Health and Human Services, asking for a response to the letter sent last August toDHHS by the Chronic Fatigue Syndrome Advisory Board. These were really excellent recommendations, and the Board worked hard on them. They deserve attention.Unfortunately, the letter itself was made available only in ADOBE format.As most Congressional delegations do not accept attachments through email these days, and as many members of this list are not equipped to handle Adobe (pdf) formatting, I copied the file into WORD, and then copied it intoemail format so that I could send it to my own representatives.The only downside to this was that I lost the signatures -- the letter was signed by thirteen Representatives, but I only could make out about half of the signatures. Those were Representatives Tammy Baldwin, Sue Myrick,Frank Pallone, Jr., Jim McDermott, Jim Moran, Michael R. McNulty, and Harold Ford.I've enclosed the text of the letter within this email (NOT as an attachment) so that you can send it to your Representative and Senators. ***PLEASE do this.***All it takes to send it to your Representative is to go tohttp://www.house.gov/writerep/ and follow the instructions. For your Senators, go to http://www.senate.gov/Write one paragraph quickly introducing yourself as a constituent and asking foryour Representative or Senator's support of this letter.Then drag and click! - COPY the letter at the bottom of this email, and PASTE it into the email you are sending. Ta da. Should work for even the most brainfogged. ;-) The letter follows my sign-off.Mary Schweitzer, mailto:marymsch###comcast.net----------------------------------------Congress of the United StatesHouse of RepresentativesWashington, DC 20515August 8, 2005The Honorable Michael O. LeavittSecretary of Health and Human ServicesU.S. Department of Health and Human Services200 Independence Avenue, SWWashington, DC 20201Dear Secretary Leavitt,We are writing in regard to the Chronic Fatigue Syndrome Advisory Committeeâ€™s (CFSAC) 11 recommendations, submitted last August. As you know, the CFSAC was chartered in 2002 to advise the Department of Health and Human Services on policy and programs as they affect persons with chronic fatigue syndrome (CFS). Since 2003, the Committee has met quarterly and developed a set of 11 recommendations that were submitted in August 2004 to Principal Deputy Assistant Secretary for Health Christina Beato, MD. CFS is a significant public health concern that warrants greater attention and commitment. We request your attention to the Committeeâ€™srecommendations, and respectfully ask for a response to their suggestions.Chronic Fatigue Syndrome, also called chronic fatigue and immune dysfunction syndrome, is a complex and debilitating illness that affectsthe brain and multiple body systems. Symptoms of CFS include severe exhaustion, widespread joint and muscle pain, cognitive difficulties and relapse after previously well-tolerated physical or mental exertion. CDC estimates that more than 800,000 American adults and teens have CFS, costing our nation an estimated $9.1 billion a year in lost productivity not including medical costs. Of course, our knowledge about CFS is limited,and there is no known cause or biologic marker to diagnose the disease.Furthermore, treatment of CFS symptoms is often ineffective, sometimes resulting in extended disability for many patients.In the CFSACâ€™s assessment, the greatest priority for DHHS is to expand research funding and scope. Future research efforts should probably take a multidisciplinary approach, since CFS affects a number of highly integrated body systems particularly the immune,endocrine and nervous systems. Based on these needs, the CFSAC has urged DHHS to do the following: * Direct the NIH to establish five Centers of Excellence within the UnitedStates that would focus on the diagnosis, clinical research and management,and treatment of persons with CFS. Such Centers would be modeled after the existing Centers of Excellence program, with funding in the range of $1.5 million per center per year for five years. * Direct the NIH to expedite the issue of a Request for Applications with sufficient set-aide funds to attract senior level researchers to engage in the study of CFS. DHHS should fund extramural grants, reviewed by a special emphasis panel knowledgeable in CFS, through RO1, RO3, R21, and Directorâ€™s Pioneer Award mechanisms. * Provide funds to develop an international Network of Collaborators that would allow for multidisciplinary CFS-related research. * Provide support and funding for an intramural staffed laboratory at NIH, committed to CFS research.Seven secondary recommendations of the CFSAC urge DHHS to: * Promote, encourage and fund research directed toward the diagnosis, epidemiology, and treatment of CFS in children and adolescents. * Through the CDC and NIH, continue to sponsor focused workshops in specific areas of CFS and to invite investigators not currently working on CFS who have been identified as having an interest in the illness. * Pursue making CFS a topic of training for health care providers, wherever appropriate at regional and national conferences sponsored by the Department. * Encourage continuing education for Social Security reviewers and adjudicators.DHHS should recommend that adjudicators follow the Social Security Policy ruling 99-2P, which specifically clarifies policies regarding CFS. * Increase public education on CFS through a public awareness campaign. Discrimination in health care, education and the workplace should be actively confronted. * Through CDC, classify CFS as a â€œNervous System Diseaseâ€ as worded in the ICD-10 G93.3. * Consider participation of the Department of Defense, Department of VeteransAffairs, Agency for Healthcare Research and Quality, and the National Institute ofDisability and Rehabilitations Research (NIDRR) as ex-officio members of the CFSAC for future deliberations of recommendations.We would appreciate it if you could provide us with a response to these recommendations. This disease affects the everyday lives of many Americans, and we urge you to carefully consider strategies that will help to address current limitations in research and treatment.Sincerely,Rep. Tammy Baldwin (Madison, WISC.), and 12 other members of the House ofRepresentatives.


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