To: U.S. Secretary of Health and Human Services
October 28, 2013
Dear Secretary Sebelius,
We are writing as patient forum leaders, not-for-profit organization managers, scholars, authors, filmmakers, bloggers and other advocates working on behalf of individuals with the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to inform you that we stand united in support of the positions expressed in the letter to you dated September 23, 2013; updated October 25, 2013; and currently signed by 50 biomedical researchers and clinicians with expertise in ME/CFS.
As you know, the 1994 International Case Definition (Fukuda et al, 1994), commonly known as the Fukuda definition, was the primary case definition for ME/CFS for almost two decades.
However, as our experts wrote to you, in recent years expert researchers and clinicians have increasingly used the Canadian Consensus Criteria (CCC), as they have recognized that the CCC is a more scientifically accurate description of the disease. Unlike the Fukuda definition, the more up-to-date CCC incorporates the extensive scientific knowledge gained from decades of research, our experts explained.
As described in the letter from our experts, there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and failure to do so will significantly impede research and harm patient care. This step will facilitate efforts to define the biomarkers, which will be used to further refine the case definition in the future, our experts agreed.
We strongly urge the Department of Health and Human Services (HHS) to follow our experts' lead by using the CCC as the sole case definition for ME/CFS in all of the Department's activities related to this disease.
In addition, we strongly urge you to abandon reliance on groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. In addition, as our experts wrote, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.
ME/CFS patients who have been disabled for decades by this devastating disease need to see the field move forward and there is no time to waste. We believe that our experts' consensus decision on a case definition for the disease will jump start progress and lead to much more rapid advancement in research and care for ME/CFS patients. We look forward to this accelerated progress and urge you to work with the people who know the most about this disease — our experts — in order to effectively increase scientific understanding of the pathophysiology of this disease, educate medical professionals, develop more effective treatments, and eventually find a cure.
United States Signatories
Michael S. Allen, Ph.D.
Ph.D., M.S., Syracuse University
Former Clinical Psychologist (disabled since 1993 at age 45)
Former Member of Board of Directors, Gay and Lesbian Alliance Against Defamation
Keith Baker, B.A.
B.A., Psychology, University of Maine
Former Clinical Case manager, The May Institute (disabled)
Ill with CFS since 1987 (26 years)
Heidi Bauer, M.A.
M.A. English Education, Indiana University of Pennsylvania
B.S., English Literature, Indiana University of Pennsylvania
Former Teacher (disabled starting in 1995)
Janis Bell, Ph.D., NMD, RYT
Ph.D Brown University
Former Associate Professor, Kenyon College (disabled 1994 – present)
Grants from Fulbright, Harvard, American Academy in Rome
Extensive publications before becoming disabled
Currently Blogger, “Search for the Cure”
Katrina Berne, Ph.D.
Ph.D., Union Institute and University
M.C., Arizona State University
M.A., Montclair State College
B.A., Douglass College, Rutgers University
Ill with ME/CFS since 1984, disabled since 2001
Clinical Psychologist, College Instructor, Lecturer, Advocate.
Author of articles about ME/CFS/FM, an audiotape series, and the books “Running on Empty: Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses” (2001) and “Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome” (1992, 1995)
Antonia (Toni) Bernhard, J.D.
Former Dean of Students and Faculty Member, University of California, Davis, School of Law, 1982-2004 (currently disabled)
Author of the multiple award-winning “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” and the newly-released “How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow”
Patient Advocate/Blogger at “Psychology Today” online. Name of Blog: "Turning Straw Into Gold"
Disabled 24 years
Administrator, “CFS/ME/CFIDS: Feel Great Destinations”
Harvard Ph.D student on medical leave (disabled at age 28)
A.B. Princeton University
Director & Producer, “Canary in a Coal Mine”
Jeannette Burmeister, J.D.
J.D., Free University Berlin School of Law
LL.M., University of San Francisco School of Law
Former Attorney at Baker & McKenzie, LLP (disabled at age 34)
Attorney at Law and Rechtsanwältin, licensed to practice law in California and Germany
Patient Advocate/Blogger, “Thoughts About ME”
Terri Campbell, Ph.D.
Ph.D., Pacifica Graduate Institute
M.A., John F. Kennedy University
Former Psychologist in San Francisco (disabled at age 42)
Patient Advocate/Blogger, “Three Miles at a Time (ME/CFS Warrior)”
Meg Carlson, M.A.
M.A., Psychology, Sonoma State University
B.A., Women's and Gender Studies, Sonoma State University
Trained as Volunteer Hospital Chaplain and Domestic Violence Advocate
Somatic Experiencing Practitioner (trauma therapy)
Chronically ill since 1982 at age 29
Patient Advocate/Support Group Facilitator
Director, ImmuneDysfunction.org (The Vermont CFIDS Association)
Patricia Carter, J.D.
J.D., University of Florida College of Law (with Honors)
B.A., Public Administration and Political Science, University of Central Florida (Magna Cum Laude)
Florida Bar Association Member No. 198528
Former Assistant Professor, University of Central Florida
Former Partner, Carter & Stalnaker, Attorneys at Law, Winter Park, Florida (disabled at age 41 in 1986)
Administrator, “ME CFS Forums” (currently 6820 members)
Nicole Castillo, B.A.
B.A., University of Georgia
Director, The Blue Ribbon Foundation
Ann Cavanagh, M.B.A.
M.B.A., Johns Hopkins University
B.S., Journalism and Mass Communications, Drake University
Director, Sales, Fortune 500 company (disabled in 2008 at age 30 ) Patient Advocate
Ray Colliton, B.A.
B.A., Philosophy, St. Paul?s College, Washington, D.C.
Former Systems Administrator (disabled with ME/CFS in 1988)
Managing Owner, “The Co-Cure Project”
Jamie Deckoff-Jones, M.D.
M.D., The Albert Einstein College of Medicine
A.B., Harvard University
Patient Advocate, "X Rx"
Mary Dimmock, B.A.
B.A., Connecticut College
Retired Scientist and Business Analyst, Pfizer Pharmaceuticals
Patient Carer and Advocate
Pat Fero, MEPD
Master of Education and Professional Development, University of Wisconsin – Whitewater
Executive Director, Wisconsin ME and CFS Association, inc.
Maureen Goggins, B.S.
B.S., University of Illinois at Urbana-Champaign
Gradual onset disability
Jean Harrison, A.B.
AB Wellesley College
Former Museum Conservator for Oil Paintings (disabled since 1994)
Founder MAME (Mothers Against ME) in 1999
Degree, Beth Israel Hospital School of Biomedical Photography
Lowell Institute Program, Massachusetts Institute of Technology
Former medical photographer and business owner (disabled at age 37)
Member of several program planning and selection committees and a name change workgroup for Chronic Fatigue Syndrome for the US Department of Health and Human Services (1996-2003)
ME/CFS Author and Advocate
Eileen Holderman, B.S.
B.S. Radio-TV-Film, University of Texas at Austin
Former profession: radio broadcaster, public relations (NYC)
1985 Incline Village "Tahoe Mystery Illness" survivor
Participant, Holmes et al CFS definition patient study group
Former Hang Gliding and Windsurfing Instructor
Author, Chapter 23, "Mold at Ground Zero for CFS" in Dr. Ritchie Shoemaker?s book," Mold Warriors"
Hillary Johnson, M.S.
M.S., Columbia University (Graduate School of Journalism) 1975 B.S., U.C. Berkeley 1974
Reporter: Minneapolis Tribune, Women's Wear Daily, W, Life magazine, Vogue, Rolling Stone, Wall Street Journal, etc. (1975-1986)
Author, "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" (Crown Publishing Group, New York, 1996)
Assistant Professor, Journalism, Marist College, NY 2000-2003
Myalgic Encephalomyelitis: March 1986-present
Gail R. Kansky, B.S.
B.S., Lesley University
Former Teacher (disabled)
President, National CFIDS Foundation (all-volunteer charity that has funded close to $2 million to advance research)
Roger King, Ph.D.
Ph.D., Agricultural Economics, University of Reading, England
M.S., University of Massachusetts Amherst
B.S., Food Science, University of Nottingham, England
Former University Professor (stopped teaching as a result of ME/CFS)
Novelist, “Love and Fatigue in America”
Mindy Kitei, M.S.
M.S., Northwestern University (Medill School of Journalism)
B.A., University of Pennsylvania
Magazine editor, bestselling health-book author and advocate for a good friend who died from this disease
Blogger, “CFS Central”
Former vice president of administration for an Insurance company
Disabled for the past 10 years
Susan A. Kreutzer, J.D.
J.D., University of Santa Clara Law School
B.S., California Polytechnic University at San Luis Obispo
Former Senior Staff Counsel CA Department of Insurance (disabled at age 51)
Parent of two young men with severe ME (CFS)
Developer of “Speak Up About ME”
Master Equivalency, Speech Pathology, Indiana State University
B.S., Speech Pathology, Pennsylvania State University
Former School Speech/Language Pathologist for 30 years
Disabled since 2007
Beth Mazur, B.S.
BS, Electrical Engineering and Computer Science, MIT
S. Siobhan McElwee
Former Artist/ Owner of Talkingfox Studios
Became Ill in 1978, completely disabled since 2006
Courtney Miller, B.A.
B.A., Cum Laude, Yale University
Wife of Longtime ME/CFS Patient
Obama Promise to Elevate ME/CFS
ME/CFS Patient & Advocate
Former Fire Boss Coal-Miner Certified – EMT trained (Became ill with ME/CFS in 1982)
Ampligen – FDA clinical trial participant
11 Day Hunger-Striker for Treatments, Jan. 2013
NIH State of Knowledge Workshop participant
ME/CFS FDA Drug Development Workshop panelist
Advocate for self and deceased 46-year old son who committed suicide after having ME for 20 years and despairing of no treatments.
Advocate for other sufferers.
Advocacy Chair, New Jersey Chronic Fatigue Syndrome Association
Matina Nicholson, M.B.A.
M.B.A., Dartmouth College (The Tuck School of Business)
B.S., International Business Management, Goldey Beacom College
Executive Program in Pharmaceutical Marketing
Former VP Marketing and Director of E-marketing at Leading NYC Pharmaceutical
Advertising Agency (disabled at age 38)
Former Management Executive (disabled at age 48)
Vice President, Massachusetts CFIDS/ME & FM Association
Lisa Petrison, Ph.D.
Ph.D., Marketing, Kellogg School of Management, Northwestern University
M.S., B.S., Medill School of Journalism, Northwestern University
Former Tenure-Track Professor, Loyola University Chicago (disabled at age 36)
Executive Director, Paradigm Change
Ryan Prior, B.A.
B.A., University of Georgia
President, The Blue Ribbon Foundation
Justin Reilly, J.D.
J.D., Georgetown University Law Center
B.A., Brown University
Former Attorney at Senn, Lewis & Visciano, Denver, Colorado (disabled at age 30)
Judith A. Richman, Ph.D.
Ph.D., Columbia University
Professor of Epidemiology in Psychiatry, University of Illinois at Chicago
Author of many journal articles on this illness
Andrea Runyan, B.S.
B.S. Math, Stanford University (Goldwater Scholar)
Disabled at age 23, now partly recovered
Video Blogger, “Grow Your Life”
Mary Schweitzer, Ph.D.
Ph.D., Johns Hopkins University
Former Professor of History, Villanova University (disabled ) Author and Patient Advocate
George Segerman,M.B.A., M.I.S.
M.B.A., M.I.S., City University
Human Resource Management, University of Washington
University of Puget Sound Law School, Tacoma, WA
B.P.A., Public Affairs, Seattle University
Criminal Justice, Washington State Patrol Academy
GCS Associates Management Organizational Development
Manager/Consultant Worldwide Technology Center, Weyerhauser
Manager Windows PSS Division, Microsoft
Patient Advocate Research Funding, Member of the Microsoft Alumni Foundation
Rivka Solomon, M.S.
Advocate for ME/CFS Patients
Jerrold Spinhirne, S.E.B. Arch.
S.E.B.Arch., University of Illinois at Chicago
B.A., University of Chicago
Licensed Structural Engineer
Former Senior Project Engineer at Thornton Tomasetti (disabled since 1996)
Patient Advocate, U.S. Campaign for Myalgic Encephalomyelitis (M.E.)
Maryann Spurgin, Ph.D.
Ph.D., M.A., Philosophy, The University of Texas at Austin
B.A., Languages and Philosophy, LSU Baton Rouge
Formerly taught philosophy
Ill with Myalgic Encephalomyelitis since March 2, 1982 (became too sick to teach in mid-30's)
Author of over 10 articles and reviews on topics in science and medical politics
Wrote and constructed the M.E. Society of America website
Served in U.S. Army, 1974-80
Social work student when stricken with CFS in 1987
Sick for 26 years (since age 46)
Patient Advocate/Support Group Leader
Bachelor's in Business Administration, UC Berkeley
Board of Directors for “The Blue Ribbon: ME/CFS and the Future of Medicine”
M.A., Syracuse University
B.A., Tufts University
Author, “Chronic Fatigue Syndrome: A Treatment Guide”
Patient Advocate, "Onward Through The Fog"
Charlotte von Salis, J.D.
J.D., University of Virginia School of Law
B.A., Brown University
Former attorney (disabled since 1991)
M.B.A., Finance and International Business, New York University (with Honors)
B.A., Architectural Sciences, Harvard University (with Honors)
Former Wall Street Analyst, Oil & Gas Industry
Ill with ME/CFS since 1989
Co-Founder and Reporter, “ME/CFS Alert”
Became ill in 2010 at age 16
Current Student, University of Cincinnati
Founder, President and CEO, Whittemore Peterson Institute for Neuro-Immune Disease
Chronically ill for 25 years
Social Media, Donor Relations and Patient Advocacy, Whittemore Peterson Institute for Neuro-Immune Disease
Laura A. Willoughby-Snow
M.A., Washington State University
Former Art Director/Designer, Major Jewelry Company
Disabled in the Incline Village/Lake Tahoe epidemic 29+ years ago at the age of 20 Patient Advocate (letters, videos, paintings, poetry, etc.)
Patient Volunteer, Simmaron Research Foundation, 2011
Disabled at Age 21
Former teacher at Frankfurt University (Germany) and translator (disabled since age 33)
Translated many ME/CFS-related documents (including the Canadian Consensus Criteria (CCC)) from English into German
Official photographer at Invest in ME (London) since 2007
Patient Advocate since 2001
Kati Debelic, RN, BSN
RN, BSN, Universite de Montreal
Former Oncology Nurse (disabled at age 39)
Angela Kennedy M.A. (also retired R.G.N.)
Associate Lecturer, Open University and Independent Academic Researcher
Author of the book “Authors of Our Own Misfortune?: The Problems with Psychogenic Explanations for Physical Illnesses” (Village Digital Press, 2012)
Carer and parent of disabled woman who became ill at 12 years of age.
Giles Meehan, M.A. M.Eng. (Cantab)
Masters Degree in Engineering, University of Cambridge, England
Former Engineer (disabled at age 22)
Journalist/TV Producer/Blogger, “Get Well From ME”
Disabled since 2001
Jan van Roijen
Alumnus, The Theater Academy (cum laude)
Former Actor (performing in classical and modern stage and television productions)
Disabled in 1983, currently completely housebound
Patient Advocate and Publisher of the “Help ME Circle” Email Bulletin (with scientific and advocacy information circulated in 25 countries)
Barack Obama, President of the United States of America
Senator Tom Harkin, Chairman, Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Senator Jerry Moran, Ranking Member, Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Dr. Harvey Fineberg, President, Institute of Medicine
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
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. Mary Wakefield, Administrator, Health Resources and Services 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
Ms. Carolyn W. Colvin, Commissioner, Social Security Administration