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New Letter Requesting Cancellation of HHS-IOM Contract and Signed by 197 Professionals and Advocates Sent to Secretary Sebelius

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.



U.S. 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

Patient Advocate


Dave Asprey

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.

Patient Advocate



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


Linda Barossi

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

Patient Advocate


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

Patient Advocate



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



Victoria Bell

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)


Paul Beth

Disabled 24 years

Administrator, “CFS/ME/CFIDS: Feel Great Destinations”



Howard Bloom

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.

Patient Advocate


Andrew Bokelman

M.A., Education, California State University Northridge

Former Senior Administrative Analyst, Los Angeles Unified School District

Disabled since 2005

Patient Advocate


Libby Boone

M.F.A., American Conservatory Theatre, San Francisco

B.A., Memphis State University, Tennessee

Professional Actor and Teacher for 20 years

Disabled in 1992

Patient Advocate


Jennifer Brea

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


Rich Carson

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



Nicole Castillo

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

Patient Advocate


John Cella

B.S., B.A., Villanova University

Former Business Owner

Ill with M.E. since 2000. Disabled since 2010.

Patient Advocate



Paul R. Cheney, M.D., Ph.D.

Director, The Cheney Clinic, PA

Asheville, NC


John K.S. Chia, M.D.

Researcher and Clinician

President, EV Med Research

Lomita, California


Ray Colliton

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



Brenda Conway

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.

Patient Advocate


Kenny L. De Meirleir, M.D., Ph.D.

Professor Emeritus Physiology and Medicine (Vrije Universiteit Brussel)

Medical Director, Whittemore Peterson Institute

University of Nevada

Reno, Nevada


Michael Dessin

B.S., University of Cincinnati

Former Sales Executive

Disabled and very severely ill with ME/CFS in 2006, now mostly recovered.

Patient Advocate


Arlyn DeWees

A.B., University of Florida

Former Editor of Legal Newsletters and Scientific Journals

Acquired CFS/ME in 1984, primarily housebound since 2009

Patient Advocate


Mary Dimmock

B.A., Connecticut College

Strategic Business Analyst

Patient Advocate and Caregiver


John Dodson, B.S.E.

B.S.E., Industrial Education

Patient Advocate



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

Patient Advocate



Derek Enlander, M.D., M.R.C.S., L.R.C.P.

Attending Physician

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.



Judy Frederiksen

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

Pawlet, Vermont


Robin Funk

Degree, Business Administration, Columbia College

Diagnosed at age 34 in 1988 (outbreak in Sonora, California)

Former Paralegal (housebound since 2011)

Patient Advocate



Martha Gandelman

B.S., Natural Science, Worcester State College

Sudden onset illness in 1988. Totally disabled for 20 years.

Patient Advocate


Gaston Gingues

B.S., Science, University of New Hampshire

Former Chemist (disabled at age 33)

Became permanently ill after a bout of mono

Patient Advocate


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

Columbus, Ohio


Maureen Goggins

B.S., University of Illinois at Urbana-Champaign

Gradual onset disability

Patient Advocate


Karen Goode

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


Marie Gregg

Part-Time Library Clerk in North Idaho

Diagnosed with M.E. in 2010

Patient Advocate



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

Patient Advocate


Henry Gurr, Ph.D.

Ph.D., Physics, Case Western Reserve University

University Professor




Jean Harrison

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


Heidi Hayward

Sick for 9 Years

Patient Advocate


John Herd

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

DePaul University

Chicago, Illinois


Erik Johnson

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

Patient Advocate


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

Patient Advocate


Roger King

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


Mindy Kitei

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


Gabby Klein

Former Vice President of Administration for an Insurance Company

Disabled for the past 10 years

Patient Advocate


Ann M. Cavanagh Kramer

M.B.A., Johns Hopkins University

B.S., Journalism, Drake University

Former Director, Commercial Sales, Visa Inc. (disabled in 2009)

Patient Advocate


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

Patient Advocate


Natalie Laraba

Master of Physical Therapy, West Virginia University

Physical Therapist (disabled December 2012)

Patient Advocate


Anita D. Laverman, Ph.D.

Ph.D., Boston University

Clinical Psychologist

ME/CFS patient since 1968

Patient Advocate


Rosemary Lee

B.A., Political Science/English, University of California, Los Angeles

Former Corporate Broker, Woodside Homes (disabled since 2009)

Patient Advocate/Blogger, Seeking Equilibrium



Ria Leenders

Disabled since 2002

Patient Advocate


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.

Patient Advocate


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


Kathleen Manganaro

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

Patient Advocate


Stephanie Mass

Former School Social Worker (disabled since 2009)

Patient Advocate


Craig Maupin

B.A., English Mary Baldwin College (with Distinction)

B.A., Marketing Communication, Mary Baldwin College (with Distinction)

Administrator/Editor, The CFS Report



Beth Mazur

B.S., Electrical Engineering and Computer Science, MIT

Patient Advocate


Siobhan McElwee

Former Artist, Writer and Musician

Ill since 1978. Fully disabled since 2007.

Patient Activist



Billie Moore

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)

Patient Advocate



Matina Nicholson

B.S., International Business Management, Goldey Beacom College

Senior Manager, eMarketing Top 500 Fortune Pharmaceutical Company

7 years with ME

Patient Advocate



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

Patient Advocate


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)

Patient Advocate


Lilan Patri

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

Patient Advocate


Ella Peregrine

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

Patient Advocate



Ryan Prior

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)

Patient Advocate


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

Patient Advocate


Katherine Reynolds

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.

Patient Advocate



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

Patient Advocate



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

Chicago, Illinois


Victoria Rose

B.S., Dartmouth University

Disabled since 1983

Advocate and volunteer for National CFIDS Foundation



Andrea Runyan

B.S., Math, Stanford University (Goldwater Scholar)

Marketing Researcher

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)

Patient Advocate




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

Patient Advocate



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)


Rivka Solomon


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



Kathryn Stephens

Served in U.S. Army, 1974-80

Social work student when stricken with CFS in 1987

Sick for 26 years (since age 46)

Newsletter Editor/Author

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)

Patient Advocate


Joey Tuan

Bachelor’s in Business Administration, UC Berkeley

Former Consultant

Patient Advocate

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

Patient Advocate



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

M.E. Advocate



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


Erica Verrillo

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 



Toby Vokal

A.A.S., Architectural/Construction Technology, Baker College

Disabled at age 18

Patient Advocate


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

M.E. Advocate


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

Patient Advocate


Samuel Wales

Author, The Kafka Pandemic



Deborah Waroff

M.B.A., Finance and International Business, New York University (with Honors)

B.A., Architectural Sciences, Harvard University (with Honors)

Former Journalist

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

Columbus, Ohio


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

Patient Advocate


Lynda Wright

Patient Advocate


Laurel Wright-Feighery

B.A., Japanese, University of Utah

Former Customer Engineer at IBM for 16 years until disabled in 1995

Patient Advocate



International Signatories:


Susanna Agardy

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)

Patient Advocate.




Lyle Allan, M.A., B.Com.

M.A., Political Science, University of Melbourne

Bachelor of Commerce, University of Melbourne

Former Teacher, Victoria University, Melbourne

Patient Advocate




Jo Best 

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)

Let’s Do It for 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


Natalie Boulton

Patient Advocate

Carer for daughter (a severe M.E. patient) for over 22 years.

Author, Lost Voices from a Hidden Illness

Filmmaker, “Voices from the Shadows”




Wendy Boutilier

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

Patient Advocate




Sally Burch

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.

Patient Advocate

Blogger, Just M.E.


Northern Ireland


Amara Campbell

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)

Patient Advocate



Sheila Campbell

B.Sc., Biological Sciences, Zoology, Edinburgh University, Scotland

Former Teacher (disabled since 1983)

Patient Advocate



Suzy Chapman

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)




Regina Clos

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

Patient Advocate




Natasha Collins

Bachelor of Theology, University of Divinity

Former Minister of Religion (disabled in 2010)

Patient Advocate



Janet Comerford

B.Sc., Biochemistry, Staffordshire University

Former Science Teacher

Ill since 1997

Patient Advocate




Rosie Cox

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.

Patient Advocate



Kati Debelic, R.N., B.S.N.

R.N., B.S.N., Universite de Montreal

Former Oncology Nurse (disabled at age 39)

Patient Advocate



Gunther De Bock

Degree, Humanities, Wetenschappen

Disabled for over 13 years

Patient Advocate

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.




Hilary Devereux

M.A., Royal Academy Schools

Former Self-Employed Artist

Patient Advocate



Greta Devits

Former Appropriations and Insurance Consultant, KBC (bank)

Disabled in 2006

Member of the ME/CFS advocacy group Wake-Up Call Beweging vzw.





Caroline DeVries

B.A., Hogeschool Ultrecht (University of Applied Sciences Ultrecht)

Former Art Therapist and Receptionist

Ill for 4.5 years

Patient Advocate




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




Peter Evans

M.E. Patient

Former Chairperson, ME/CFS/FM Association of Queensland



Michael Evison

B.Sc., Electrical Engineering, Sheffield Hallam University (with Honors)

Caregiver to an M.E. patient

Patient Advocate




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.

Patient Advocate






Andrew Fifield

Former Part-Time Student (Ill since Grade 2)

M.E. Sufferer, 17+ years

Currently Homebound/Bedbound (for several years)

Patient Advocate



Barbara Fifield

Former Accountant

M.E. Sufferer, 30+ years

Currently Homebound/Bedbound (for more than a decade)

Patient Advocate



John Gabor

Patient Advocate



Carlos Gonzalez

Degree, Economics, University Autonoma, Madrid

Sick since 2005

Patient Advocate





Simon Goodwin

CFS/ME onset in 1990 at age 12

Have never worked due to disability

CFS/ME Advocate



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

Patient Advocate




Carmel Hillary

Degree in Sports Therapy, Brighton University

Former Sports Therapist and Advanced Personal Trainer (disabled since 2003)


Let’s Do It for ME



Ingrid Holsboer-Verhulst

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


Aziza Jansen

B.A. Degree, University of Utrecht, Netherlands

M.E. since childhood. Disabled since 2007.

Patient Advocate



Richard Paul Kayes

Member of the advocacy group Let’s Do It for M.E.!




Simonne Kelly

Disabled since 2006 with Fibromyalgia/CFS

Patient Advocate




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.



Eddy Keuninckx

Higher Administrative ICT, A2 Electronics (Digital Technology, Autodidact)

Senior ICT Project Leader for Major Contracts at Steria Belux

Disabled at age 52

Patient Advocate




Michael Koolhaas

Master’s Degree, University of Amsterdam

Former Econometrician

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

Patient Advocate



Nicole Krüger


Lost Voices Stiftung (Foundation)





Jan Laverick

Disabled since 1999 (while at college)

Co-founder of the advocacy group Let’s Do It for M.E.!

Patient Advocate




Sarah Lawry

BSc (Hons) Geology, Polytechnic of North London

Former Civil Servant (disabled at age 25 in 1994)

Patient Advocate




Ros Lemarchand

Bachelor of Education, West Midlands College

Former Teacher and then Local Government Officer

Ill since 2002. Born in the UK, diagnosed there in 2003.

Patient Advocate

Blog, My A-Z of M.E.




Gabi Lewis

B.A., Events Management, De Montfort University, Leicester, UK (with Honors)

Former Marketing Manager

Disabled since age 26

CEO, Neuroimmune Alliance




Vanessa Li

Former Student, University of London (disabled)

Patient Advocate




Priscilla Ling

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)

Patient Advocate




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”



Lajla Mark

Danish College Degree

Former Linguistic Faculty and Secretary of the Staff-Student Committee at the Copenhagen Business School

Current Chairperson, Danish M.E. Association

Patient Advocate




Penelope McMillan

B.A., Grad. Ed., University of Adelaide

Former Psychologist and Teacher (disabled in 2000)

Patient Advocate




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




Joan McParland

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



Northern Ireland


Cristina Montané

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




Shiloh Moore

Sick with M.E. and Fibromyalgia since age 10. Left school at age 15.

Patient Advocate





Alison Orr

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

Patient Advocate




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



Czech Republic


Susan Pante

College Degree

Special Education Educator

Disabled in 2007 in mid-50’s

Patient Advocate



Leela Play


Disabled since 2000

Patient Advocate



René Robert

Degree, School Mavo


M.E. Activist




Kirsten Smith

First became sick at age 13. Was partway through Bachelor of Social Work when became too ill to continue. Never well enough to work.

Patient Advocate



Martina Stark

Disabled since 1996 at age 29

Patient Advocate



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



Tessie Tess

Former Professional

Long Term Disabled

Mother/Caregiver of Patient

Patient and Parent Advocate



Yvonne van der Ploeg

Former Florist (disabled since January 2009)

Patient Advocate

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



Gert Vankelecom

Patient Advocate



Jan van Roijen

Alumnus, The Theater Academy (cum laude)

Former Teacher

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)



Sonja Verhulst

Degree, Universiteit Antwerpen-Leuven

M.E. Patient (ill since 2007)

Member of the ME/CFS action group Wake-Up Call Beweging vzw




Marianne Vileirs

Former Administrator

Member of the ME/CFS action group Wake-Up Call Beweging vzw.




Katharina Voss

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)

http://www.youtube.com/ watch?v=k3BjkLBOODM







Brenda Vreeswijk

Former Animal Attendant (disabled six years ago at age 37)

Patient Advocate




Paul Watton

B.Sc. (Hons), University of Manchester Institute of Science & Technology (UMIST)

Formerly Owner/Operator of Construction Company (for 15 years)

Became ill in 2001

Patient Advocate



Rob Wijbenga

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”)





Margaret Williams

Patient Advocate



Alex Young

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

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