I am part of a vast patient advocacy movement that opposes the HHS/IOM Contract to redefine Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). I am boycotting the May 5, 2014 IOM open meeting by not giving input on the two public questions and by not attending the meeting or watching the webcast. I am protesting by sending you this letter. There are many reasons for my opposition, the latest of which is the failure of the IOM to come up with a new case definition for Gulf War Illness (GWI) – a very similar redefinition effort to the one for ME/CFS. This failure clearly exposes the IOM’s lack of expertise when dealing with complex diseases and their case definitions, and shows that any such projects are waste of money, which would be better spent on research. It also a waste of time, which patients who are desperately ill with this disease cannot afford to lose. The IOM panel consisting of members mostly inexperienced in GWI could not define the disease. We feel that the mostly inexperienced members of the ME/CFS panel will fail as well. If the IOM can't define GWI, they need to stop work on ME/CFS now. Please support us by asking HHS to cancel the IOM Review of Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to follow the recommendation made by the 50 top ME/CFS experts: Immediate adoption of the Canadian Consensus Criteria for ME/CFS. I also demand you adopt the name, Myalgic Encephalomyelitis (World Health Organization ICD-10 code 93.3), and drop the misleading and demeaning name Chronic Fatigue Syndrome. Recipients: Barack Obama, President of the United States of America Senate Committee on Health, Education, Labor and Pensions Sen. Tom Harkin (IA) Chairman Sen. Barbara A. Mikulski (MD) Sen. Patty Murray (WA) Sen. Bernard Sanders (I) (VT) Sen. Robert P. Casey, Jr. (PA) Sen. Kay R. Hagan (NC) Sen. Al Franken (MN) Sen. Michael F. Bennet (CO) Sen. Sheldon Whitehouse (RI) Sen. Tammy Baldwin (WI) Sen. Christopher S. Murphy (CT) Sen. Elizabeth Warren (MA) Sen. Lamar Alexander (TN) Ranking Member Sen. Michael B. Enzi (WY) Sen. Richard Burr (NC) Sen. Johnny Isakson (GA) Sen. Rand Paul (KY) Sen. Orrin G. Hatch (UT) Sen. Pat Roberts (KS) Sen. Lisa Murkowski (AK) Sen. Mark Kirk (IL) Sen. Tim Scott (SC) US House Committee on Labor, Health and Human Services, Education, and Related Agencies Rep. Jack Kingston, Georgia, Chairman Rep. Steve Womack, Arkansas, Vice-Chairman Rep. Chuck Fleischmann, Tennessee Rep. David Joyce, Ohio Rep. Andy Harris, MD, Maryland Rep. Martha Roby, Alabama Rep. Chris Stewart, Utah Rep. Rosa DeLauro, Connecticut, Ranking Member Rep. Nita Lowey, New York Rep. Lucille Roybal-Allard, California Rep. Barbara Lee, California Rep. Mike Honda, California House Subcommittee on Health, Employment, Labor, and Pensions Rep. Rush Holt - Ranking Member Alicia Siani - Legislative Assistant Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services Dr. Howard Koh, Assistant Secretary for Health, Department of Health and Human Services Dr. Wanda Jones, Principal Deputy Assistant Secretary for Health, Department of Health and Human Services Daniel R. Levinson, Inspector General, U.S. Department of Health and Human Services Jennifer M. Cannistra - Executive Secretary , U.S. Department of Health and Human Services Oliver Potts - Deputy Executive Secretary, U.S. Department of Health and Human Services Adam Trzeciak, Inspector General, U.S. Government Accountability Office Dr. Harvey Fineberg, President, Institute of Medicine Sherla Allen, Senior Executive Assistant, Institute of Medicine Dr. Richard Kronick, Director, Agency for Healthcare Research and Quality Dr. Thomas Frieden, Director, Centers for Disease Control and Prevention Ms. Marilyn Tavenner, Administrator, Centers for Medicare and Medicaid Services Dr. Margaret Hamburg, Commissioner, U.S. Food and Drug Administration Dr. Francis Collins, Director, National Institutes of Health Dr. Harold Varmus, Director of the National Cancer Institute Dr. Anthony Fauci , Director of the National Institute for Allergy and Infectious Diseases Dr. Mary Wakefield, Administrator, Health Resources and Services Administration Ms. Carolyn W. Colvin, Commissioner, Social Security Administration