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Open Letter from ME/CFS Advocates to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services

  [ 20 votes ]   [ Discuss This Article ]
www.ProHealth.com • November 3, 2013


To: U.S. Secretary of Health and Human Services

October 28, 2013

Dear Secretary Sebelius,

We are writing as patient forum leaders, not-for-profit organization managers, scholars, authors, filmmakers, bloggers and other advocates working on behalf of individuals with the disease of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to inform you that we stand united in support of the positions expressed in the letter to you dated September 23, 2013; updated October 25, 2013; and currently signed by 50 biomedical researchers and clinicians with expertise in ME/CFS.

As you know, the 1994 International Case Definition (Fukuda et al, 1994), commonly known as the Fukuda definition, was the primary case definition for ME/CFS for almost two decades.

However, as our experts wrote to you, in recent years expert researchers and clinicians have increasingly used the Canadian Consensus Criteria (CCC), as they have recognized that the CCC is a more scientifically accurate description of the disease. Unlike the Fukuda definition, the more up-to-date CCC incorporates the extensive scientific knowledge gained from decades of research, our experts explained.

As described in the letter from our experts, there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and failure to do so will significantly impede research and harm patient care. This step will facilitate efforts to define the biomarkers, which will be used to further refine the case definition in the future, our experts agreed.

We strongly urge the Department of Health and Human Services (HHS) to follow our experts' lead by using the CCC as the sole case definition for ME/CFS in all of the Department's activities related to this disease.

In addition, we strongly urge you to abandon reliance on groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. In addition, as our experts wrote, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.

ME/CFS patients who have been disabled for decades by this devastating disease need to see the field move forward and there is no time to waste. We believe that our experts' consensus decision on a case definition for the disease will jump start progress and lead to much more rapid advancement in research and care for ME/CFS patients. We look forward to this accelerated progress and urge you to work with the people who know the most about this disease -- our experts -- in order to effectively increase scientific understanding of the pathophysiology of this disease, educate medical professionals, develop more effective treatments, and eventually find a cure.

Sincerely,

United States Signatories

Michael S. Allen, Ph.D.

Ph.D., M.S., Syracuse University

Former Clinical Psychologist (disabled since 1993 at age 45)

Former Member of Board of Directors, Gay and Lesbian Alliance Against Defamation

Patient Advocate

 

Keith Baker, B.A.

B.A., Psychology, University of Maine

Former Clinical Case manager, The May Institute (disabled)

Ill with CFS since 1987 (26 years)

Patient Advocate

 

Heidi Bauer, M.A.

M.A. English Education, Indiana University of Pennsylvania

B.S., English Literature, Indiana University of Pennsylvania

Former Teacher (disabled starting in 1995)

Patient Advocate

 

Janis Bell, Ph.D., NMD, RYT

Ph.D Brown University

Former Associate Professor, Kenyon College (disabled 1994 - present)

Grants from Fulbright, Harvard, American Academy in Rome

Extensive publications before becoming disabled

Currently Blogger, “Search for the Cure”

cfsmethylation.blogspot.com

 

Katrina Berne, Ph.D.

Ph.D., Union Institute and University

M.C., Arizona State University

M.A., Montclair State College

B.A., Douglass College, Rutgers University

Ill with ME/CFS since 1984, disabled since 2001

Clinical Psychologist, College Instructor, Lecturer, Advocate.

Author of articles about ME/CFS/FM, an audiotape series, and the books “Running on Empty: Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses” (2001) and “Running on Empty: Chronic Fatigue Immune Dysfunction Syndrome” (1992, 1995)

 

Antonia (Toni) Bernhard, J.D.

Former Dean of Students and Faculty Member, University of California, Davis, School of Law, 1982-2004 (currently disabled)

Author of the multiple award-winning “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers” and the newly-released “How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow”

Patient Advocate/Blogger at “Psychology Today” online. Name of Blog: "Turning Straw Into Gold"

Website: www.tonibernhard.com

 

Paul Beth

Disabled 24 years

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

http://health.groups.yahoo.com/group/CFS_CFIDS_ME/

 

Jennifer Brea

Harvard Ph.D student on medical leave (disabled at age 28)

A.B. Princeton University

Director & Producer, “Canary in a Coal Mine”

www.canaryinacoalminefilm.com

 

Jeannette Burmeister, J.D.

J.D., Free University Berlin School of Law

LL.M., University of San Francisco School of Law

Former Attorney at Baker & McKenzie, LLP (disabled at age 34)

Attorney at Law and Rechtsanwältin, licensed to practice law in California and Germany

Patient Advocate/Blogger, “Thoughts About ME”

www.thoughtsaboutme.com

 

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)”

http://cfswarrior.blogspot.com

 

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

 

Rik Carlson

Illness Survivor

Director, ImmuneDysfunction.org (The Vermont CFIDS Association)

 

Patricia Carter, J.D.

J.D., University of Florida College of Law (with Honors)

B.A., Public Administration and Political Science, University of Central Florida (Magna Cum Laude)

Florida Bar Association Member No. 198528

Former Assistant Professor, University of Central Florida

Former Partner, Carter & Stalnaker, Attorneys at Law, Winter Park, Florida (disabled at age 41 in 1986)

Administrator, “ME CFS Forums” (currently 6820 members)

www.mecfsforums.com

 

Nicole Castillo, B.A.

B.A., University of Georgia

Director, The Blue Ribbon Foundation

Ann Cavanagh, M.B.A.

M.B.A., Johns Hopkins University

B.S., Journalism and Mass Communications, Drake University

Director, Sales, Fortune 500 company (disabled in 2008 at age 30 ) Patient Advocate

 

Ray Colliton, B.A.

B.A., Philosophy, St. Paul?s College, Washington, D.C.

Former Systems Administrator (disabled with ME/CFS in 1988)

Managing Owner, “The Co-Cure Project”

http://www.co-cure.org/

 

Jamie Deckoff-Jones, M.D.

M.D., The Albert Einstein College of Medicine

A.B., Harvard University

Patient Advocate, "X Rx"

http://blogspot.x-rx.net/

 

Mary Dimmock, B.A.

B.A., Connecticut College

Retired Scientist and Business Analyst, Pfizer Pharmaceuticals

Patient Carer and Advocate

 

Pat Fero, MEPD

Master of Education and Professional Development, University of Wisconsin - Whitewater

Executive Director, Wisconsin ME and CFS Association, inc.

http://www.wicfs-me.org/

 

Maureen Goggins, B.S.

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

Gradual onset disability

Patient Advocate

 

Jean Harrison, A.B.

AB Wellesley College

Former Museum Conservator for Oil Paintings (disabled since 1994)

Founder MAME (Mothers Against ME) in 1999

 

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

 

Eileen Holderman, B.S.

B.S. Radio-TV-Film, University of Texas at Austin

Former profession: radio broadcaster, public relations (NYC)

ME Advocate

 

Cort Johnson

Patient Advocate

 

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"

 

Hillary Johnson, M.S.

M.S., Columbia University (Graduate School of Journalism) 1975 B.S., U.C. Berkeley 1974

Reporter: Minneapolis Tribune, Women's Wear Daily, W, Life magazine, Vogue, Rolling Stone, Wall Street Journal, etc. (1975-1986)

Author, "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic" (Crown Publishing Group, New York, 1996)

Assistant Professor, Journalism, Marist College, NY 2000-2003

Myalgic Encephalomyelitis: March 1986-present

 

Gail R. Kansky, B.S.

B.S., Lesley University

Former Teacher (disabled)

President, National CFIDS Foundation (all-volunteer charity that has funded close to $2 million to advance research)

www.NCF-NET.org

 

Roger King, Ph.D.

Ph.D., Agricultural Economics, University of Reading, England

M.S., University of Massachusetts Amherst

B.S., Food Science, University of Nottingham, England

Former University Professor (stopped teaching as a result of ME/CFS)

Novelist, “Love and Fatigue in America”

 

Mindy Kitei, M.S.

M.S., Northwestern University (Medill School of Journalism)

B.A., University of Pennsylvania

Magazine editor, bestselling health-book author and advocate for a good friend who died from this disease

Blogger, “CFS Central”

www.cfscentral.com/

 

Gabby Klein

Former vice president of administration for an Insurance company

Disabled for the past 10 years

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 CA Department of Insurance (disabled at age 51)

Patient Advocate

 

Denise Lopez-Majano

Parent of two young men with severe ME (CFS)

Patient Advocate

Developer of “Speak Up About ME”

http://speakupaboutme.wordpress.com/

 

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

 

Beth Mazur, B.S.

BS, Electrical Engineering and Computer Science, MIT

Patient Advocate

 

S. Siobhan McElwee

Former Artist/ Owner of Talkingfox Studios

Became Ill in 1978, completely disabled since 2006

ME Activist

 

Courtney Miller, B.A.

B.A., Cum Laude, Yale University

Wife of Longtime ME/CFS Patient

Obama Promise to Elevate ME/CFS

courtneyalexander999@msn.com

 

Robert Miller

ME/CFS Patient & Advocate

Former Fire Boss Coal-Miner Certified - EMT trained (Became ill with ME/CFS in 1982)

Ampligen - FDA clinical trial participant

11 Day Hunger-Striker for Treatments, Jan. 2013

NIH State of Knowledge Workshop participant

ME/CFS FDA Drug Development Workshop panelist

bobmiller42@msn.com

 

Billie Moore

Advocate for self and deceased 46-year old son who committed suicide after having ME for 20 years and despairing of no treatments.

Advocate for other sufferers.

Advocacy Chair, New Jersey Chronic Fatigue Syndrome Association

 

Matina Nicholson, M.B.A.

M.B.A., Dartmouth College (The Tuck School of Business)

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

Executive Program in Pharmaceutical Marketing

Former VP Marketing and Director of E-marketing at Leading NYC Pharmaceutical

Advertising Agency (disabled at age 38)

Patient Advocate

 

Donna Pearson

Former Management Executive (disabled at age 48)

Vice President, Massachusetts CFIDS/ME & FM Association

Patient Advocate

 

Lisa Petrison, Ph.D.

Ph.D., Marketing, Kellogg School of Management, Northwestern University

M.S., B.S., Medill School of Journalism, Northwestern University

Former Tenure-Track Professor, Loyola University Chicago (disabled at age 36)

Executive Director, Paradigm Change

www.paradigmchange.me

 

Ryan Prior, B.A.

B.A., University of Georgia

President, The Blue Ribbon Foundation

 

Justin Reilly, J.D.

J.D., Georgetown University Law Center

B.A., Brown University

Former Attorney at Senn, Lewis & Visciano, Denver, Colorado (disabled at age 30)

Patient Advocate

 

Judith A. Richman, Ph.D.

Ph.D., Columbia University

Professor of Epidemiology in Psychiatry, University of Illinois at Chicago

Author of many journal articles on this illness

 

Andrea Runyan, B.S.

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

Marketing Researcher

Disabled at age 23, now partly recovered

Video Blogger, “Grow Your Life”

http://www.youtube.com/user/Xicota85

 

Mary Schweitzer, Ph.D.

Ph.D., Johns Hopkins University

Former Professor of History, Villanova University (disabled ) Author and Patient Advocate

 

George Segerman,M.B.A., M.I.S.

M.B.A., M.I.S., City University

Human Resource Management, University of Washington

University of Puget Sound Law School, Tacoma, WA

B.P.A., Public Affairs, Seattle University

Criminal Justice, Washington State Patrol Academy

GCS Associates Management Organizational Development

Manager/Consultant Worldwide Technology Center, Weyerhauser

Manager Windows PSS Division, Microsoft

Patient Advocate Research Funding, Member of the Microsoft Alumni Foundation

 

Rivka Solomon, M.S.

Writer, playwright

Advocate for ME/CFS Patients

 

Jerrold Spinhirne, S.E.B. Arch.

S.E.B.Arch., University of Illinois at Chicago

B.A., University of Chicago

Licensed Structural Engineer

Former Senior Project Engineer at Thornton Tomasetti (disabled since 1996)

Patient Advocate, U.S. Campaign for Myalgic Encephalomyelitis (M.E.)

https://www.facebook.com/groups/624505110934978/

 

Maryann Spurgin, Ph.D.

Ph.D., M.A., Philosophy, The University of Texas at Austin

B.A., Languages and Philosophy, LSU Baton Rouge

Formerly taught philosophy

Ill with Myalgic Encephalomyelitis since March 2, 1982 (became too sick to teach in mid-30's)

Author of over 10 articles and reviews on topics in science and medical politics

Wrote and constructed the M.E. Society of America website

www.cfids-cab.org/MESA/

 

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

 

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”

 

Erica Verrillo

M.A., Syracuse University

B.A., Tufts University

Author, “Chronic Fatigue Syndrome: A Treatment Guide”

Editor, ProHealth

Patient Advocate, "Onward Through The Fog"

ww.cfstreatment.blogspot.co.uk/

 

Charlotte von Salis, J.D.

J.D., University of Virginia School of Law

B.A., Brown University

Former attorney (disabled since 1991)

Patient Advocate

 

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”

http://www.youtube.com/user/MECFSAlert

 

Sara Whitestone

Became ill in 2010 at age 16

Current Student, University of Cincinnati

Patient Advocate

 

Annette Whittemore

Founder, President and CEO, Whittemore Peterson Institute for Neuro-Immune Disease

www.wpinstitute.org

 

Andrea Whittemore-Goad

Chronically ill for 25 years

Social Media, Donor Relations and Patient Advocacy, Whittemore Peterson Institute for Neuro-Immune Disease

www.wpinstitute.org

 

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

 

Danny Zee

Disabled at Age 21

Patient Advocate

 

International Signatories:

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 ME (London) since 2007

Patient Advocate since 2001

www.cfs-aktuell.de

Germany

 

Kati Debelic, RN, BSN

RN, BSN, Universite de Montreal

Former Oncology Nurse (disabled at age 39)

Patient Advocate

Canada

 

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.

England

 

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”

www.getwellfromme.com

England

 

Leela Play

Professional

Disabled since 2001

Patient Advocate

Canada

 

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 ME Circle” Email Bulletin (with scientific and advocacy information circulated in 25 countries)

Netherlands

Cc:

Barack Obama, President of the United States of America

Senator Tom Harkin, Chairman, Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Senator Jerry Moran, Ranking Member, Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

Dr. Harvey Fineberg, President, Institute of Medicine

Dr. Howard Koh, Assistant Secretary for Health, Department of Health and Human Services

Dr. Wanda Jones, Principal Deputy Assistant Secretary for Health, Department of Health and Human Services

Dr. Richard Kronick, Director, Agency for Healthcare Research and Quality

Dr. Thomas Frieden,Director, Centers for Disease Control and Prevention

Ms. Marilyn Tavenner, Administrator, Centers for Medicare and Medicaid Services

Dr. Margaret Hamburg, Commissioner, U.S. Food and Drug Administration

Dr. Mary Wakefield, Administrator, Health Resources and Services Administration

Dr. Francis Collins, Director, National Institutes of Health

Dr. Harold Varmus, Director of the National Cancer Institute

Dr. Anthony Fauci , Director of the National Institute for Allergy and Infectious Diseases

Ms. Carolyn W. Colvin, Commissioner, Social Security Administration



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