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ME/CFS Patient Groups Call for Immediate Investigation of CFSAC Threats

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By Erica Verrillo • www.ProHealth.com • June 22, 2013

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On June 12, 2013, twelve ME/CFS patient organizations and 23 patient advocates signed a letter calling for an immediate investigation into threats made against three members of the CFS Advisory Committee (CFSAC). The letter was written in response to events that occurred on the second day of of the CFSAC meeting (May 23rd). During the meeting, patient advocate Eileen Holderman, after repeated attempts on the part of the chair to silence her, stated that she was "afraid." Holderman went on to say, "I have been intimidated, and I’m afraid to speak out but I am going to. I know that there are two other committee members who have also gotten calls." A short time later, researcher Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views.

Federal Advisory Committees were established to help the executive branch formulate federal policy. The CFSAC was created to advise the Secretary of Health on issues such as healthcare, the science and definition of CFS, and other issues related to the disease. Over the last decade, CFSAC has made more than 70 recommendations to the Secretary on a number of issues, including research funding, provider education, case definition, and a name change. According to Holderman, the CFSAC has acted on none of them.

Although the CFSAC operates at the behest of the federal government, it has come under fire for violations of the Federal Advisory Committee Act, including acting in secrecy to reduce or reword recommendations made by committee members. (Read Jennie Spotila's article HERE.) 

You can read the full text of the letter below. A transcript of the portion of the meeting including Holderman's allegations can be read HERE. You can see video of this portion of the meeting HERE. (Start at 42:12)

June 12, 2013

By postal and electronic mail

William B. Schultz

General Counsel Department of Health and Human Services

200 Independence Avenue SW Room 713-F Washington, DC 20201

William.Schultz@hhs.gov

Dear Mr. Schultz,

On behalf of the undersigned organizations and individuals, I am writing to request your immediate investigation into alleged intimidation of three voting members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a Department of Health and Human Services advisory committee housed within the Offrce on Women’s Health. As organizations and advocates serving patients with Chronic Fatigue Syndrome (CFS), we have a longstanding interest in federal policy regarding CFS.

At its most recent public meeting on May 23,2013, voting member Eileen Holderman stated that Dr. Nancy Lee, the Committee’s Designated Federal Officer (DFO), had intimidated her and two others. Voting member Dr. Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views. The third member subjected to the alleged intimidation was not identified. We have enclosed a transcript of portion of the meeting during which these allegations were made, and highlighted the allegations on pages 3 and 4.

The independence of the CFSAC and the balance of views among the membership are essential to its advisory role. Threats or intimidation of voting members for expressing their views, particularly by the DFO, would materially impair the CFSAC’s ability to formulate recommendations to the Secretary. Despite the seriousness of these allegations, neither Dr. Lee nor Chairman Dr. Gailen Marshall made any public comment, nor did they promise to look into the allegations or take corrective action.

Therefore, we must ask you to investigate these allegations immediately, and establish whether any voting member of the CFSAC has been intimidated or threatened for expressing their opinions.

Thank you for your prompt attention to this matter.

Sincerely,

Mary Dimmock, for the undersigned organizations and individuals

Patient Organizations

Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivity Coalition of Chicago

CFS/Fibromyalgia Organizations of Georgia, Inc.

MAME (Mothers Against Myalgic Encephalomyelitis)

Massachusetts CFIDS/ME & FM Association

PANDORA (a.k.a. CFS Solutions of West Michigan)

Phoenix Rising

The Fibromyalgia-ME/CFS Support Center, Inc.

Race to Solve CFS

Rocky Mountain CFS/ME and FM Association

Speak Up About ME

The Vermont CFIDS Association, Inc.

Wisconsin ME/CFS Association, Inc. 

Individual Advocates

Rik Carlson, Lori Chapo-Kroger,  R.N., Lily Chu, M.D., Mary Dimmock, Pat Fero, M.E.P.D., Kenneth J. Friedman, Ph.D., Joan Grobstein, M.D., Jean Harrison, Suzan Jackson, Michele Krisko, Denise Lopez-Majano, Billie Moore, Mike Munoz, Matina Nicolson, Donna Pearson, Meghan Shannon, M.S., M.F.T, Nancy Smith, Rivka Solomon, Jennifer  Spotila, J.D., Tamara Staples, Tina Tidmore, Erica Verillo, Charlotte von Salis, J.D.


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