A new letter signed by 197 professionals and advocates working on behalf of individuals with Myalgic Encephalomyelitis (M.E.) has been sent to Secretary Kathleen Sebelius and cc’d to a number of other individuals.
This letter repeats the request from the previous letter from experts and from the previous letter from advocates that the Department of Health and Human Services (HHS) adopt the Canadian Consensus Criteria (CCC) for the disease, rather than having the Institute of Medicine (IOM) develop a new definition.
The letter also states specific objections to the provisional slate of committee members announced to the public by IOM; asks for an increase in government funding for biomedical research into the disease; and requests that the government consistently call the disease by its proper name, Myalgic Encephalomyelitis (ME).
A PDF of the letter including full signatures can be found at the following link. (If you get a black screen, press “Download” and you will be able to read the letter.)
The text from the new letter and a list of names of people who signed it are below.
The signers of this new letter include fourteen of the individuals who signed the “experts’ letter” as well as the majority of those who signed the “advocates’ letter.”
Note that the lack of signatures from specific professionals on this letter should not be taken to mean that those individuals have changed their position from the original “experts’ letter” or are not in agreement with the contents of this letter. Unfortunately, due to a communications glitch internal to the project, professionals were given only one business day (just prior to the Christmas holiday) to respond to receipt of information about this letter. In addition, due to limitations in our contact email list, some professionals were not reached at all or were reached through suboptimal addresses. Some signers of the original “advocates’ letter” unfortunately were not contacted personally about this project either.
Other recipients of the letter include various government officials, many researchers and physicians specializing in M.E., a number of journalists, and the president of the Institute of Medicine.
Tremendous thanks go out to everyone in this community who has organized or participated in all advocacy efforts with regard to the re-definition of the illness so far, including the “experts’ letter,” the “advocates’ letter,” this new letter, the petitions, the fact-finding, the legal actions, the Twitter campaign, the blogs and forum discussions, the media articles, the personal letters and emails, and everything else.
And we are not finished.
An Open Letter to the Honorable Kathleen Sebelius,
U.S. Secretary of Health and Human Services
December 26, 2013
Dear Secretary Sebelius,
We are writing as researchers, physicians, authors, filmmakers, patient forum leaders, not-for-profit organization managers, bloggers and other advocates working on behalf of individuals with Myalgic Encephalomyelitis (ME), a disease that the U.S. government has historically referred to by the misleading name of Chronic Fatigue Syndrome (CFS) and more recently has called ME/CFS.
The purpose of this letter is to inform you that our previously expressed position regarding the government’s plan to redefine this disease through the Institute of Medicine (IOM) remains unchanged.
Since the September announcement of the contract with the IOM, concerned stakeholders have conveyed to you their opposition to the involvement of the IOM in the re-definition of the disease in a number of ways (including an experts’ group letter, an advocates’ group letter, multiple petitions and many individual emails).
IOM has now released a slate of proposed committee members, asking for comments. This proposed list is unacceptable for a number of reasons. The majority of the named individuals are not experts in ME/CFS; the committee chair appears to have no ME/CFS experience at all; and several of the proposed members have backgrounds focusing on mental health issues.
These problems reinforce the concerns generated by the initial report from the IOM committee charged with providing guidance to the government on Gulf War Illness, released earlier this year. That committee gave the disease an inappropriate new name; mentioned that it has symptoms overlapping with those of “Chronic Fatigue Syndrome”; and discussed the effectiveness or need for study only of treatments that are appropriate for depression but have been shown to be ineffective or harmful for ME/CFS patients (including antidepressants, cognitive behavioral therapy and aerobic exercise). Considering that this IOM panel also was dominated by non-experts in the disease being discussed and included a number of members with backgrounds in mental health, our concerns about the likely outcome of the IOM effort to redefine ME/CFS remain very high.
We again request that the IOM contract be cancelled and that the government adopt the Canadian Consensus Criteria as the definition for this disease.
In addition, we request that the government increase the budget for biomedical research into this disease to become more equitable with the budgets for other diseases with a similar level of prevalence and severity. For instance, NIH spends more than 600 times as much on HIV/AIDS as it does on ME/CFS (with a 2014 budget of $3.1 billion for HIV/AIDS vs. a trivial $5 million for ME/CFS). Considering that the number of U.S. patients living with ME/CFS (1 million) is roughly the same as the number of people in this country living with HIV, and considering that the level of suffering endured by many ME/CFS patients is equal to that experienced by untreated AIDS patients prior to their deaths, ME/CFS is woefully underfunded. This needs to be rectified immediately.
Finally, we request that the government consistently refer to this disease by its proper name, Myalgic Encephalomyelitis (ME).
Thank you for your attention to this matter.
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
M.B.A., The Wharton School
Founder & CEO, The Bulletproof Executive
Vice President, Cloud Security, Trend Micro
Chairman, Silicon Valley Health Institute
Former CFS Patient
Catherine Atherton, Ph.D.
Ph.D., University of Cambridge, England
B.A. (Cantab.), University of Cambridge, England
Former Fellow and Tutor in Classical Philosophy, New College, University of Oxford, England
First diagnosed in 1989. Retired due to ill health 2002. Continued to lecture part-time at UCLA in Classics/Philosophy (2002-2006), until illness prohibited it.
Elisabeth Tova Bailey
CFS patient for 21 years
Author of The Sound of a Wild Snail Eating, a CFS medical humanities/natural history memoir
Lisa Frattaroli Baldwin, B.S.W., Q.D.D.P.
Bachelor of Social Work, Mars Hill University, School Social Work License (NC State)
Parent of an adult son with severe ME/CFS
Family was subjected to horrible travesty of justice when at 17 years of age their son was taken wrongly into custody by North Carolina Child Protective Services
Patient Advocate since 2004
Flight School Graduate, Licensed Pilot
Formerly owned and operated an aircraft business for 17 years
Former Aircraft Dealer, Real Estate Broker and Insurance Agent
No longer able to work in any way
Christine (Tink) Bastian
M.A., Royal Academy of Arts, The Hague, Netherlands
Former Graphic Designer
Ill since 1970. Officially declared 100% disabled by the government office of the Department of Labor in the Netherlands in 1997 at age 45
Janis Bell, Ph.D., N.M.D., R.Y.T.
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
Degrees from a private women’s college and a business college in London, England
Former Award-Winning Publisher; Former Creative and Legal Rights Agent
Former pianist; former sailor and equestrian; former leader of telemark skiing, hiking, bicycle touring and river rafting expeditions.
M.E. viral onset in 1989 at age 39. Eleven years ensued with years of collapse and illness alternating with attempts to work. Not diagnosed until became permanently disabled in 2000.
M.E. Advocate, 2003 to Present
Catherine R. Berger
Master’s in Holistic Nutrition, Hawthorne University
B.S., Animal Science, Pennsylvania State University
Disabled in 1988, diagnosed in 1991
Support Group Leader, Research Patient, Advocate
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)
Disabled 24 years
Administrator, “CFS/ME/CFIDS: Feel Great Destinations”
Author of “The God Problem: How A Godless Cosmos Creates,” “The Lucifer Principle: A Scientific Expedition Into the Forces of History,” “Global Brain: The Evolution of Mass Mind From The Big Bang to the 21st Century” and “The Genius of the Beast: A Radical Re-Vision of Capitalism”
Former Core Faculty Member, The Graduate Institute
Recent Visiting Scholar, Graduate Psychology Department, New York University
Founder and Chairman, Space Exploration Asia
Founder, International Paleopsychology Project
Founder, Space Development Steering Committee
Member Of Board Of Governors, National Space Society
Founding Board Member, Epic of Evolution Society
Founding Board Member, The Darwin Project
Founder, The Big Bang Tango Media Lab
Member, New York Academy of Sciences, American Association for the Advancement of Science, American Psychological Society, Academy of Political Science, Human Behavior and Evolution Society, International Society for Human Ethology
Scientific Advisory Board Member, Lifeboat Foundation
Advisory Board Member, The Buffalo Film Festival
Board of Editors, The Journal of Space Philosophy
Valentina Bodina-Cohen, J.D.
J.D., Universita’ degli Studi Milano, Italy
Disabled by M.E. since 1981 at age 14
Since then never have been able to have a career and lead a normal life.
M.A., Education, California State University Northridge
Former Senior Administrative Analyst, Los Angeles Unified School District
Disabled since 2005
M.F.A., American Conservatory Theatre, San Francisco
B.A., Memphis State University, Tennessee
Professional Actor and Teacher for 20 years
Disabled in 1992
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
L.L.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 M.E.
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
B.A., UC Santa Barbara
Former Stockbroker (totally disabled 1987 at age 31)
Owner, ProHealth (largest number of likes for any ME/CFS group or individual (100,000+) and largest number of ME/CFS Twitter followers (5000+))
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)
Creator of the Petition to stop the HHS-IOM contract and accept the CCC definition of M.E., now with 3,250+ signatures
B.A., University of Georgia
Director, The Blue Ribbon Foundation
Belinda Cella, M.S.
M.S., Communicative Disorders/Speech Pathology, Utah State University
Disabled and unable to work
B.S., B.A., Villanova University
Former Business Owner
Ill with M.E. since 2000. Disabled since 2010.
Paul R. Cheney, M.D., Ph.D.
Director, The Cheney Clinic, PA
John K.S. Chia, M.D.
Researcher and Clinician
President, EV Med Research
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”
JoAnn (Joni) Comstock
Salon Owner & Operator (closed Dec. 2004 due to disability)
Former Office Manager (chronically ill since 1997 at age 33)
Patient Advocate, May 12 International Awareness Day Events
M.B.A., University of Chicago
B.A., Vanderbilt University
Former career in the economics of the transportation industry
First became unable to work in 1984 at age 39. Permanently and fully disabled since 1994.
Kenny L. De Meirleir, M.D., Ph.D.
Professor Emeritus Physiology and Medicine (Vrije Universiteit Brussel)
Medical Director, Whittemore Peterson Institute
University of Nevada
B.S., University of Cincinnati
Former Sales Executive
Disabled and very severely ill with ME/CFS in 2006, now mostly recovered.
A.B., University of Florida
Former Editor of Legal Newsletters and Scientific Journals
Acquired CFS/ME in 1984, primarily housebound since 2009
B.A., Connecticut College
Strategic Business Analyst
Patient Advocate and Caregiver
John Dodson, B.S.E.
B.S.E., Industrial Education
Susan Dodson, M.A.
M.A., B.A., Speech Pathology, Texas Tech University
Former Division Director, Early Childhood Intervention, State of Texas, Austin
Ill with ME/CFS since June 19, 1988
Derek Enlander, M.D., M.R.C.S., L.R.C.P.
Mount Sinai Medical Center, New York
ME CFS Center, Mount Sinai School of Medicine
New York, New York
Pat Fero, M.E.P.D.
Master of Education and Professional Development, University of Wisconsin – Whitewater
Executive Director, Wisconsin ME and CFS Association, Inc.
Associates Degree, Business Administration, SCC, Lincoln, NE
Former PM&D Manager, Sprint
Co-Manage Patient Focused Website and Forum
Kenneth J. Friedman, Ph.D.
Associate Professor of Pharmacology and Physiology, New Jersey Medical School (retired)
Research Associate, Green Mountain College
Adjunct Instructor, Castleton State College
Degree, Business Administration, Columbia College
Diagnosed at age 34 in 1988 (outbreak in Sonora, California)
Former Paralegal (housebound since 2011)
B.S., Natural Science, Worcester State College
Sudden onset illness in 1988. Totally disabled for 20 years.
B.S., Science, University of New Hampshire
Former Chemist (disabled at age 33)
Became permanently ill after a bout of mono
Ronald Glaser, Ph.D., FABMR
Director, Institute for Behavioral Medicine Research
Kathryn & Gilbert Mitchell Chair in Medicine
College of Medicine – Distinguished Professor
Professor, Molecular Virology, Immunology and Medical Genetics
Professor, Internal Medicine
Professor, Division of Environment Health Sciences, College of Public Health
Institute for Behavioral Medicine Research
B.S., University of Illinois at Urbana-Champaign
Gradual onset disability
B.S., Life Sciences, Pennsylvania State University (Capital College Honors Program Graduate)
Former Aspiring Medical Student
Ill with M.E. since 2002 at age 21, disabled since 2009
Gradual Onset Disability
M.E. Advocate and Guinea Pig
Julie Murray Goodlaxson
B.F.A. Design, The University of Iowa
Former Special Projects Assistant, City of Iowa City, Water Division of Public Works
Became ill with ME/CFS in September 2005
Became unable to work 2009 and bedridden in 2011
Former community organizer (local, state, and national) for issues concerning Education, Special Education, the ADA, Autism Awareness, and Educating Children with Autism
Campaign Officer for several local campaigns
Patient Advocate for ME/CFS
Part-Time Library Clerk in North Idaho
Diagnosed with M.E. in 2010
Joan Grobstein, M.D.
M.D., University of California Davis School of Medicine
A.B., Harvard University
Former Neonatologist at Children’s Hospital of Philadelphia
Acute onset ME 1999
Henry Gurr, Ph.D.
Ph.D., Physics, Case Western Reserve University
A.B., Wellesley College
Former Museum Conservator for Oil Paintings (disabled since 1994)
Contracted Post Viral Fatigue Syndrome in 1958. Diagnosed in 1969.
Founded MAME (Mothers Against ME) in 1999
Sick for 9 Years
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
Leonard A. Jason, Ph.D.
Epidemiological and Case Definition Researcher
Director, Center for Community Research
Professor of Psychology
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
Gail R. Kansky
B.S., Lesley University
Former Teacher (disabled)
President, National CFIDS Foundation (all-volunteer charity that has funded close to $2 million to advance research)
Anne Keith, M.A.
M.A. (with additional Ph.D. classwork), Stanford University
Bachelor’s of Music, Boston University
Former Project Coordinator, Sun Microsystems
Ill since 1992. Fully disabled and unable to work since 1999.
Patient Advocate and Community Organizer
AnneFightsME on Twitter
Nicole Kelly, M.S.
Ph.D. Candidate, Clinical Psychology, Palo Alto University, Pacific Graduate School of Psychology
M.S., Clinical Psychology, Palo Alto University, Pacific Graduate School of Psychology
B.A., Psychology, Humboldt State University
Former Clinical Psychology Therapy Intern
Became primarily housebound at age 33
Mary A. Kindel
B.S., Industrial Design, University of Cincinnati
Former Industrial/Graphic/Web Designer, Technical Writer, Musician, Luthier
Disabled in 2000 at age 37
Ph.D., Agricultural Economics, University of Reading, England
M.S., University of Massachusetts Amherst
B.S., Food Science, University of Nottingham, England
Former Consultant on Rural Poverty to UN Agencies
Former University Professor (stopped teaching as a result of ME/CFS)
Author, Love and Fatigue in America and three other novels
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
Ann M. Cavanagh Kramer
M.B.A., Johns Hopkins University
B.S., Journalism, Drake University
Former Director, Commercial Sales, Visa Inc. (disabled in 2009)
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, California Department of Insurance
Disabled and unable to continue working in March 2008 at age 57
Master of Physical Therapy, West Virginia University
Physical Therapist (disabled December 2012)
Anita D. Laverman, Ph.D.
Ph.D., Boston University
ME/CFS patient since 1968
B.A., Political Science/English, University of California, Los Angeles
Former Corporate Broker, Woodside Homes (disabled since 2009)
Patient Advocate/Blogger, Seeking Equilibrium
Disabled since 2002
Diane Lewis, M.S.W., M.B.A., L.C.S.W.-C
M.S.W., University of Maryland School of Social Work (2004 Harry S. Truman Fellow)
M.B.A., Frostburg State University
Afflicted at age 50 in 2005. Medical early retirement/disabled since 2010.
Anne LiConti, R.N.
Nursing Degree, College of Staten Island, CUNY
Former CCU and Operating Room Registered Nurse
Disabled from ME/CFS since age 1994
Symptoms of M.E. since 1965
Vice President of MAME (Mothers Against M.E.)
M.E. Patient Advocate
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
Former School Social Worker (disabled since 2009)
B.A., English Mary Baldwin College (with Distinction)
B.A., Marketing Communication, Mary Baldwin College (with Distinction)
Administrator/Editor, The CFS Report
B.S., Electrical Engineering and Computer Science, MIT
Former Artist, Writer and Musician
Ill since 1978. Fully disabled since 2007.
B.A., Pennsylvania State University
Mother of son who died of ME/CFS (Eric was disabled for 20 years and died at age 46)
Advocacy Chair, New Jersey Chronic Fatigue Syndrome Association
Jacqueline McBride Nance
Former Professional Artist
Permanently Disabled with ME at age 40 (more than 22 years)
B.S., International Business Management, Goldey Beacom College
Senior Manager, eMarketing Top 500 Fortune Pharmaceutical Company
7 years with ME
Linda R. Oldershaw, R.N.
R.N., St. Luke’s Hospital School of Nursing
Former Director of Medical Services, Blue Cross Blue Shield
Disabled since 2007
James M. Oleske, M.D., M.P.H.
François-Xavier Bagnoud Professor of Pediatrics
Director, Division of Pediatrics Allergy, Immunology & Infectious Diseases
Department of Pediatrics, Rutgers New Jersey Medical School
Newark, New Jersey
Jane Pannell, R.N., ACRN
B.S., Nursing, Western Connecticut State University
Former Nurse/HIV Project Director (Disabled)
M.F.A., Creative Writing, Sarah Lawrence College
B.A., English, University of California Berkeley
Former Writer, Editor and Teacher
Ill with ME/CFS 11 years, disabled since January 2010
Interfaith Minister, Sufi Ruhaniat International
B.A., Humanities, University of Louisville
Former Research Coordinator, Neurodevelopmental Sciences Laboratory, University of Louisville
Severely disabled in 2008 at age 42
Patient Advocate, Administrator of U.S. Campaign for Myalgic Encephalomyelitis
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
First became ill during doctoral program. Disabled at age 36.
Executive Director, Paradigm Change
Richard Podell, M.D., M.P.H.
Clinical Professor, Department of Family Medicine
UMDNJ Robert Wood Johnson Medical School
New Brunswick, New Jersey
Shirley Powers, M.S.
M.S., San Francisco State University
Former Assistant Director, Citywide Case Management, UCSF Department of Psychiatry
Formerly in private practice
Co-author, Clinical Case Management
Ill for 15 years
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)
T. Gorman Reilly, J.D.
J.D., New York University
B.A., Fordham University
Former FDA Attorney
Former Federal Prosecutor in SDNY
Commander (retired), US Navy Intelligence
Partner (retired), Hahn & Hessen, New York, NY
M.F.A., Creative Writing, Vermont College
M.A., Creative Writing, University of Houston
B.S., Education, Kent State University
Former Professor of English, Lone Star College Tomball, Texas (1989-2010)
Ill with M.E. since 2009. Disabled since 2010.
Donna Richburg, J.D., M.S.
M.S., Clinical Psychology, University of South Alabama
J.D., Quinnipiac University School of Law
Former Children’s Therapist, Baldwin County Mental Health Center (5 years)
Practiced law for over 10 years. Last position, Stiller Disability Law, Managing Attorney
Became ill in 1984 at age 14. Years of relapse and remission.
Illness progressed in 2007. Cut back on work hours until July 2012 until a complete collapse. Now housebound and 95% bed bound/couch bound.
Disabled since July 2012 at age 43.
Wife and Mother of a five year old son
Judith A. Richman, Ph.D.
Ph.D., Columbia University
Author of many articles about this disease
Professor of Epidemiology in Psychiatry
University of Illinois at Chicago
B.S., Dartmouth University
Disabled since 1983
Advocate and volunteer for National CFIDS Foundation
B.S., Math, Stanford University (Goldwater Scholar)
Disabled at age 23, now partly recovered
Video Blogger, Grow Your Life
Mary M. Schweitzer, Ph.D.
Ph.D., Johns Hopkins University
B.A., Duke University
Former Associate Professor of History, Villanova University (disabled in 1994 at age 44)
Vickie Selleck, M.S.E.E.
M.S.E.E., Rutgers University
B.S., Chemistry, Binghamton University
Former Member of Technical Staff, Bell Labs, Alcatel-Lucent
Disabled in 2007 at age 51
Carol Sieverling, M.Div.
M.Div. and M.A.C.E., Union Presbyterian Seminary
B.A., Math, Sterling College
Former High School Math Teacher, Associate Pastor
Ill and disabled since 1987, on Long Term Disability since 1996
Treasurer and Former President of the CFS/FM Support Group of DFW (Dallas/Ft. Worth)
Sick for 24 years
Advocate for ME/CFS Patients
Jerrold Spinhirne, 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 (ME)
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
Former editor of various publications
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
Founder, Myalgic Encephalomyelitis Society of America/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
Julian M. Stewart, M.D., Ph.D.
Director, Center for Hypotension, Associate Chairman of Pediatrics, Professor of Pediatrics,
Physiology and Medicine
New York Medical College
Vahalla, New York
Jane Tompkins, Ph.D.
Ph.D., Yale University
B.A., Bryn Mawr College
Former Professor of Literature, Duke University (disabled in 2005)
Bachelor’s in Business Administration, UC Berkeley
Board of Directors for “The Blue Ribbon: ME/CFS and the Future of Medicine”
Margaret K. S. Twohey
B.A., Smith College
Disabled since 1995
Lois Keener Ventura
Former Author and Photographer; Former Artist and Owner, Knothome Designs
Former Naturalist, Explorer, Hiker, Runner, Swimmer, Musician, Vet Tech, Animal Rescue and Animal Welfare Advocate
Disabled by M.E. in 1996 at age 37, due to repeated attempts to exercise back to health
Web Designer and Co-Owner, Replay Publishing/Sports Games
Co-Founder, Web Design & Content, National Alliance for Myalgic Encephalomyelitis
Peter J. Ventura
Owner, Replay Publishing/Sports Games
Testified before CFSAC December 2003
Website Backer, www.name-us.org
M.E. Advocate and Caregiver 17 years
Doctoral Program, Speech Communication, UT Austin
M.A., Syracuse University
B.A., Tufts University
Former Instructor of Public Speaking, Linguistics, ESL and Spanish
Author, Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition
Editor, ME/CFS HealthWatch
Blogger, Onward Through The Fog
A.A.S., Architectural/Construction Technology, Baker College
Disabled at age 18
Charlotte von Salis, J.D.
J.D., University of Virginia School of Law
B.A., Brown University
Former Senior Associate Counsel, UMWA Health & Retirement Funds
Disabled since 1991
Tracy Waechter, D.V.M.
D.V.M., The Ohio State University.
Former Veterinarian (worked for 10 years)
Became very ill at age 33, permanently disabled at age 35
Author, The Kafka Pandemic
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
Marshall V. Williams, Ph.D.
Professor, Departments of Molecular Virology, Immunology and Medical Genetics; Microbiology
The Ohio State University
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
Kari L. Wilson, M.D.
M.D., Wake Forest University School of Medicine
B.S., University of California, Davis
Former Family Practice Physician
Onset of CFS/ME in 2009
B.A., Japanese, University of Utah
Former Customer Engineer at IBM for 16 years until disabled in 1995
Grad. Dip., Applied Business Administration, Swinburne University
Grad. Dip., Applied Social Psychology, Swinburne University
B.A., Dip., Social Work, University of Melbourne
Former Superannuation Regulation Officer (disabled for 14 years)
Lyle Allan, M.A., B.Com.
M.A., Political Science, University of Melbourne
Bachelor of Commerce, University of Melbourne
Former Teacher, Victoria University, Melbourne
B.A. (Hons), PGCEs, London, England
Former Teacher and Education Service Manager
Ill with M.E. since 1992. Permanently disabled in 2003 by exercise therapy.
Patient Advocate since 2010
Co-creator of Let’s Do It for ME! in 2011 (awareness and fundraising campaign in support of Invest in ME)
Alison C. Bested, M.D., F.R.C.P.C.
Medical Director, Complex Chronic Diseases Program
British Columbia Women’s Hospital and Health Centre
Clinical Associate Professor, Faculty of Medicine
Vancouver, British Columbia, Canada
Carer for daughter (a severe M.E. patient) for over 22 years.
Author, Lost Voices from a Hidden Illness
Filmmaker, “Voices from the Shadows”
B.A., Fine Arts, Art History & Anthropology, Western University & University of West Indies
Former Resort Manager in Caribbean for 19 years
Disabled in 2009 with ME
B.Sc., Zoology, PGCE, Queen’s University Belfast
Formerly Lecturer of Biological Sciences at Belfast Metropolitan College
Sudden onset illness March 2012 at age 49. Now disabled and unable to work.
Blogger, Just M.E.
Former Executive Secretary, Education Queensland (disabled in 2001 at age 23)
CEO, Change for ME Australia
James Campbell, M.Sc.
B.Sc., Biological Sciences, Zoology, Edinburgh University, Scotland
M.Sc., Ecological Resource Management, Edinburgh University, Scotland
Former Teacher and Ecologist (disabled since 1984)
B.Sc., Biological Sciences, Zoology, Edinburgh University, Scotland
Former Teacher (disabled since 1983)
Dip.A.D., Graphic Design and Communication, Canterbury College of Art
Patient Advocate since 1999 for young person with M.E.
Former Internet M.E. Support Group Leader
Dx Revision Watch (monitoring the development of DSM-5 and ICD-11)
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 M.E. (London) since 2007
Bachelor of Theology, University of Divinity
Former Minister of Religion (disabled in 2010)
B.Sc., Biochemistry, Staffordshire University
Former Science Teacher
Ill since 1997
Degree, University College Cardiff, UK
Former Couture Dress Designer
Ill since the age of 10 in 1970. “Cycling” symptoms until 1990 (thus able to have an education with some great tranches away from school). Unable to work even in the smallest capacity since 1993, homebound since 1994.
Kati Debelic, R.N., B.S.N.
R.N., B.S.N., Universite de Montreal
Former Oncology Nurse (disabled at age 39)
Gunther De Bock
Degree, Humanities, Wetenschappen
Disabled for over 13 years
Founder of the ME/CFS advocacy group, Wake-Up Call Beweging vzw.
Sofie De Middelaer
Member of the ME/CFS advocacy group, Wake-Up Call Beweging vzw.
M.A., Royal Academy Schools
Former Self-Employed Artist
Former Appropriations and Insurance Consultant, KBC (bank)
Disabled in 2006
Member of the ME/CFS advocacy group Wake-Up Call Beweging vzw.
B.A., Hogeschool Ultrecht (University of Applied Sciences Ultrecht)
Former Art Therapist and Receptionist
Ill for 4.5 years
David Egan, M.Sc.
Disabled with M.E. since 2002
Diploma in Computer Science, University of Oxford, England
Graduate Diploma in Systems Analysis and Design, NUI Galway, Ireland
Masters Degree in Science, NUI Galway, Ireland
Systems Analyst, Computer Programmer, University Tutor, Charities Worker
Campaign for an Irish M.E. clinic
Former Chairperson, ME/CFS/FM Association of Queensland
B.Sc., Electrical Engineering, Sheffield Hallam University (with Honors)
Caregiver to an M.E. patient
Kasper Ezelius, M.S.
M.S., Aerospace Engineering, KTH (Stockholm) and Sup’Aéro (Toulouse, France)
Former Research and Development Engineer
Disabled since 2001.
Leader of M.E. association and discussion forums in Sweden.
Former Part-Time Student (Ill since Grade 2)
M.E. Sufferer, 17+ years
Currently Homebound/Bedbound (for several years)
M.E. Sufferer, 30+ years
Currently Homebound/Bedbound (for more than a decade)
Degree, Economics, University Autonoma, Madrid
Sick since 2005
CFS/ME onset in 1990 at age 12
Have never worked due to disability
Paul Harterink, M.H.S.
Master of Health Sciences, Maastricht University
Former Health Scientist for the Municipality of Rotterdam, Netherlands
M.E. patient since 1999
Degree in Sports Therapy, Brighton University
Former Sports Therapist and Advanced Personal Trainer (disabled since 2003)
Degree, Delft University of Technology
Former Architect (6 years disabled)
Board of Directors, ME/cvs Association, The Netherlands
Malcolm Hooper, Ph.D., B.Pharm., M.R.I.C., C.Chem.
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Sunderland, Tyne and Wear, UK
B.A. Degree, University of Utrecht, Netherlands
M.E. since childhood. Disabled since 2007.
Richard Paul Kayes
Member of the advocacy group Let’s Do It for M.E.!
Disabled since 2006 with Fibromyalgia/CFS
Peter Kemp, M.A.
NCFE dip Integrative Counseling, Masters Counseling and Psychotherapy
Research, Thames Valley University
Head Groundsman until 1988
Patient Advocate and ME and CFS Research Analyst and Commentator
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.
Higher Administrative ICT, A2 Electronics (Digital Technology, Autodidact)
Senior ICT Project Leader for Major Contracts at Steria Belux
Disabled at age 52
Master’s Degree, University of Amsterdam
Acquired M.E. in 1985. Disabled for 29 years starting at age 28.
Chairman of Steungroep M.E. en Arbeidsongeschikheid in the Netherlands (Support Group for M.E.& Disability)
Sandra Kouwenhoven, R.N.
Bachelor of Nursing
Former Nurse (disabled since 2006
Lost Voices Stiftung (Foundation)
Disabled since 1999 (while at college)
Co-founder of the advocacy group Let’s Do It for M.E.!
BSc (Hons) Geology, Polytechnic of North London
Former Civil Servant (disabled at age 25 in 1994)
Bachelor of Education, West Midlands College
Former Teacher and then Local Government Officer
Ill since 2002. Born in the UK, diagnosed there in 2003.
Blog, My A-Z of M.E.
B.A., Events Management, De Montfort University, Leicester, UK (with Honors)
Former Marketing Manager
Disabled since age 26
CEO, Neuroimmune Alliance
Former Student, University of London (disabled)
Bachelor of Applied Science, Occupational Therapy, Lincoln Institute of Health Sciences (later amalgamated with Latrobe University, Victoria)
Former occupational therapist in rehabilitation, community and mental health with government and private organizations (disabled since1995)
Countess of Mar
Independent Member of the UK House of Lords since 1975
Organophosphate poisoning in 1989 with ongoing autonomic effects
Chairman of Forward-ME
Patron of many ME/CFS charities
Campaigner on behalf of people with ME, OP victims including aircrew and farmers, Gulf War Veterans, Lyme disease and others with “medically unexplained physical symptoms”
Danish College Degree
Former Linguistic Faculty and Secretary of the Staff-Student Committee at the Copenhagen Business School
Current Chairperson, Danish M.E. Association
B.A., Grad. Ed., University of Adelaide
Former Psychologist and Teacher (disabled in 2000)
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
City & Guilds, Professional Cookery, Hospitality and Catering Management
Former School Meals Organiser for Education Board (disabled since 1999)
Founder, Newry & Mourne ME/FMS Support Group
Co-ordinator of three International M.E. Conferences and one Medical Professionals Educational Conference in Northern Ireland
Degree, Public Relations, University of Barcelona
Board Member, Plataforma FM – CFS (association of relatives of people suffering from Fibromyalgia and Chronic Fatigue Syndrome)
Advocate for FM/ME/CFS Patients since 2004
Sick with M.E. and Fibromyalgia since age 10. Left school at age 15.
Diploma in Art (Illustration and Printmaking), Duncan of Jordanstone College of Art, Dundee, Scotland
Former Office Administrator, Sessional Craft Tutor and Belly Dance Teacher
Disabled by M.E. in 1999 at age 43
Ing. Jana Outratová, C.Sc. (equivalent to Ph.D.)
Former Statistician, Systems Analyst and IT Manager (Canada and Czech Republic)
Ill since 1950, diagnosed in 1995
Patient Advocate, Club of ME/CFS Patients – Czech Republic
Special Education Educator
Disabled in 2007 in mid-50’s
Disabled since 2000
Degree, School Mavo
First became sick at age 13. Was partway through Bachelor of Social Work when became too ill to continue. Never well enough to work.
Disabled since 1996 at age 29
Eleanor Stein, M.D., F.R.C.P.(C)
Assistant Clinical Professor, University of Calgary
Calgary, Alberta, Canada
H.T. (Heico) ten Cate
Bachelor’s Degree, Fontys in Eindhoven
Freelance Healthcare Consultant
Healthy and committed M.E. activist, active advisor with the goal of gaining acknowledgement for M.E. in the Netherlands
Long Term Disabled
Mother/Caregiver of Patient
Patient and Parent Advocate
Yvonne van der Ploeg
Former Florist (disabled since January 2009)
Board Member of ME/cvs Vereniging Nederland and Member of the project Wetenschap voor Patiënten (Science for Patients)
Els Van Hoof
Bachelor of Applied Economic Sciences, University of Antwerp
Former Manager, Database Management Department, Graydon Belgium
Ill since 2001
Patient Advocate and Member of WUCB Advocacy Group for M.E. Patients
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 M.E. Circle Email Bulletin (with scientific and advocacy information circulated in 25 countries)
Degree, Universiteit Antwerpen-Leuven
M.E. Patient (ill since 2007)
Member of the ME/CFS action group Wake-Up Call Beweging vzw
Member of the ME/CFS action group Wake-Up Call Beweging vzw.
Academy of Performing Arts, Max-Reinhardt-Seminar, Vienna (with Honors)
Former Stage Actress, Acting Instructor and Coach
Ill with M.E. since November 1975, too sick to work at all since 2011
Carer of two severely affected daughters
Patient Advocate (e.g. advising other parents with children who suffer from ME)
Former Animal Attendant (disabled six years ago at age 37)
B.Sc. (Hons), University of Manchester Institute of Science & Technology (UMIST)
Formerly Owner/Operator of Construction Company (for 15 years)
Became ill in 2001
Widower of a deceased patient suffering from severe M.E. for over 20 years
Chair, ME/cvs Vereniging Nederland
Coordinator of the International Project, “Wetenschap voor Patiënten” (“Science for Patients”)
Bachelor of Informatics, First Class Honors, Griffith University, Queensland, Australia
Bachelor of Science, University of Queensland, St. Lucia, Queensland, Australia
Former University Lecturer and Computer Science Tutor
Partially disabled in 1987
Patient Advocate and Blogger
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
Jack Kingston, Chairman, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Rosa DeLauro, Ranking Member, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Lucille Roybal-Allard, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Barbara Lee, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Mike Honda, California, U.S. House of Representatives Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies
Rush Holt, U.S. House of Representatives, Committee on Higher Education and Workforce Training, Subcommittee on Health, Employment, Labor and Pensions
Danile R. Levinson, Inspector General, U.S. Department of Health and Human Services
Adam Trzeciak, Inspector General, U.S. Government Accountability Office
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
Ms. Jennifer Cannistra, Executive Secretary, Department of Health and Human Services
Mr. Oliver Potts, Deputy Executive Secretary, 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. James M. Anderson, Deputy 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