Donna Shalala,

Secretary of the Department of Health and Human Services

200 Independence Avenue, SW.

Washington, D.C. 20201

November 9, 2000

Secretary Shalala:

We are contacting you regarding the Chronic Fatigue Syndrome Coordinating Committee (CFSCC) and requesting your help on a critical matter. There has been no progress in Chronic Fatigue Syndrome (CFS) and this committee may be largely responsible.

The GAO report, ³Chronic Fatigue Syndrome: CDC and NIH Research Activities are Diverse, but Agency Coordination is Limited states: "The Chronic Fatigue Coordinating Committee (CFSCC), specifically created by Congress to help facilitate coordination between the CDC, NIH and patient advocates, and to advise the Secretary, has essentially failed in its efforts."

This confirms the long-standing concerns of our organizations. We have attended these meetings and found them directionless and non-productive. We contacted Dr. Satcher, the Committee Chair, and were told that he believed the committee was functioning as it should. He reminded us that this committee is where our concerns regarding CFS should be addressed and he suggested that we submit nominations. We have submitted nominations of well qualified individuals to the CFSCC as well as subcommittees thereof, and all have been rejected.

Patients historically have been unable to get straightforward answers on how the members of this committee were selected, and have been told only that there were both patient and federal reviewers who scored the nominees upon which the selections were based. We filed a Freedom of Information Act (FOIA) to obtain answers. Although FOIA requests are legally required to be answered within twenty days, this information was not sent for over a year, and some is still pending. The documents revealed:

The Federal members of the review group as listed in the FOIA documents we received are:

• Dr. Brian Mahy (CDC - NCID)
• Dr. George T. Curlin (NIH - DMID)
• Dr. Patrick McNeilly (OASH)
• Dr. Joseph McDade (CDC - NCID)

Patient reviewers are:

• Ms. Patricia Blankenship
• Mr. John Herd

There was no indication as to how these patient reviewers were selected. If fairness and representativeness are to be guaranteed, a secret review committee handpicked by federal employees who have no direct contact with a representative scope of patients can hardly be expected to yield a representative committee, which it has not. This may very well be a significant reason why the GAO report found the CFSCC, which should be the central force in moving work and overseeing progress on CFS, to be completely ineffective.

Of the federal members of the review group, up until last year Dr. Mahy and Dr. Curlin were voting ex-officio members of the CFSCC and were also reviewers involved in the selection of members, as now are Dr. McDade and Dr. Dean. It appears that Dr. Donna Dean has replaced Dr. Curlin and Dr. Joe McDade has replaced Dr. Mahy (who was reassigned following CDC's misappropriation of CFS funds) as ex-officio CFSCC members. (The current CFSCC members are listed at: http://www4.od.nih.gov/cfs/roster.html.)

Non federal members of the review group must sign a legal statement affirming their non conflict of interest. Ms. Blankenship and Mr. Herd claim to be independent advocates, unaffiliated with any organization. However, they are actively involved in advocacy and frequently express opinions on political issues.

It appears that all of the non federal CFSCC members and the patient representatives thus far (with the exception of Kristen Thorson, who resigned in disgust at the committee's neffectiveness) have been affiliated with or nominated by the CFIDS Association of America (CAA). Both of the patient reviewers, (Ms. Blankenship and Mr. Herd) have subsequently been appointed to serve on subcommittees of the CFSCC (State of the Science planning group and the Name Change Committee, respectively). Ms. Kimberly Kenney of the CAA is a member of the CFSCC and to our knowledge has served on every single federal CFS committee. Various other CFSCC members have also been appointed to subcommittees. This affords no positions left for other advocates across the nation to be a part of the only government/"patient" group in the U.S.

Of all of the committee's shortcomings, the most egregious affront to the patient community was that the public testimony portion was virtually ignored by the committee. In essence, patients and advocates wasted their time and money and in many cases sacrificed their health to attend these meetings and prepare material to present to the committee in good faith, only to find out their input was never even discussed or considered, nor was the written public testimony included in full in the meeting minutes until a few weeks ago when numerous complaints were registered to DHHS. There also have been distortions, misrepresentations and omissions in the CFSCC meeting minutes.

We therefore did not submit nominations for the last round of CFSCC vacancies. The current selection process must be suspended and a new open selection process instituted to prevent the conflicts of interest, bias and apparent violations that have likely been an integral part of the failure of the CFSCC.

Dramatic changes in process, structure and composition of this committee must be accomplished. Our hope is that you will help to reform the CFSCC within DHHS. Otherwise, the only recourse for patients will be to demand a full Congressional investigation into these improprieties.

We, the undersigned, are leaders of the major national nonprofit patient organizations dedicated to finding the cure for Chronic Fatigue Syndrome.  Together, our "CAUSE AND CURE COALITION", represents the largest group of CFS patients in the United States.

Sincerely,

Thomas M. Hennessy,Jr., President, RESCIND, Inc. [Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases], MD

Sean A. Dudley, President, Mycoplasma Registry (Gulf War Illness & Chronic Fatigue Syndrome), CA 

Leslee M. Dudley, Vice President, Mycoplasma Registry, CA

Gail R. Kansky, President, National CFIDS Foundation, Inc., MA

Jill McLaughlin, Executive Director, National CFIDS Foundation, Inc., MA

Diana Saba, Founder of Our Working Fibro World, GES Recovery, TN

Shirley Bentley, President, United States Chapter Common Cause Medical Research Foundation,NY

Elizabeth Naugle, Director, Candida and Dysbiosis Information Foundation, TX

[Ed. Note: Donna Shalala resigned later in November.]