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Posted to Co-Cure Mon, 8 Jan 2001 20:23:15 -0500

GAO Report on CDC Financial Management Weaknesses

GAO Report to Congressional Requesters:

CENTERS FOR DISEASE CONTROL AND PREVENTION

Independent Accountants Identify Financial Management Weaknesses

_______________________

This is a report dated November 15, 2000 which was directed to
The Honorable Arlen Specter
Chairman
The Honorable Tom Harkin
Ranking Minority Member
Subcommittee on Labor, Health and Human Services and Education
Committee on Appropriations
United States Senate
The Honorable Pete Domenici
United States Senate
The Honorable Jeff Bingaman
United States Senate

The report begins by stating that:

"On October 12, 2000, PricewaterhouseCoopers (PwC), an independent accounting firm, issued its report on the Centers for Disease Control and Preventionís (CDC) financial management operations. You asked us to monitor and report on that effort. This report documents our concurrence with the reportís findings, conclusions, and recommendations and provides our analysis regarding financial management deficiencies at CDC."

The entire report can be downloaded at GAO.pdf

[Note: This report requires an Acrobat text reader in order to read it, but most newer computers come with Acrobat already bundled with the computer's system. If you need to obtain a free Acrobat reader, see www.adobe.com/products/acrobat/readstep.html .]

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Posted to Co-Cure Tue, 16 Jan 2001 16:20:03 -0500

Updated DHHS CFS Coordinating Committee Meeting January 30: AGENDA

From Donna Dean, PhD, as posted to the DHHS CFSCC list CMMFDC-L (#34) 1/16/01:

_____________________

The following six individuals have been designated to provide public comments on "disability and CFS" at the upcoming DHHS CFSCC meeting: Ms. Jean Linn (Texas), Dr. Robert Buck (Oregon), Ms. Elizabeth Naugle (Texas), Ms. Judith O'Leary Silverman (California), Dr. Priscilla Hall (California), and Mr. Sean and Mrs. Leslee Dudley (California). Five are presenting comments before the committee for the first time. Each individual will present a five minute statement, followed by a five minute question/discussion period with DHHS CFSCC members.


U.S. Department of Health and Human Services
Chronic Fatigue Syndrome Coordinating Committee
January 30, 2001

WestCoast Grand Hotel
Emerald III Room
1415 Fifth Avenue
Seattle, Washington

Agenda

9:00 a.m.     Welcome & Introductions
        CFSCC Administrative items

9:15 a.m.     Agency Updates:

      NIH: Dr. Donna Dean
        NIH CFS Working Group Update
        Budget Status

      CDC: Dr. Joseph McDade
        Emory University Collaborative Study
        Case Definition National Survey

      HRSA: Dr. William Robinson
        HRSA/CAA Education Project Update

10:30 a.m.     BREAK

10:45 a.m.     Reports from New CFSCC Working Groups
        Public Service Announcement WG - Mr. Jon Sterling

        Access to Medical and Social Services WG - Dr. Leonard Jason

NOON     LUNCH

1:00 p.m.     Disability and CFS: Public Comments

        Ms. Jean Linn (Texas)
        Dr. Robert Buck (Oregon)
        Ms. Elizabeth Naugle (Texas)
        Ms. Judith O'Leary Silverman (California)
        Dr. Priscilla Hall (California)
        Mr. Sean and Mrs. Leslee Dudley (California)

2:00 p.m.     Disability Issues and Employment - Mr. Toby Olson
        Return to work Issues
        Application of ADA to CFS

        Discussion - Mr. Jeffrey Rabin

3:00 p.m.     BREAK

3:15 p.m.     Report from Name Change Working Group
        Ms. Carol Lavrich
        Mr. John Herd
        Dr.Susan Levine

4:15 p.m.     Open Discussion
        DHHS CFSCC Members

5:00 p.m.     Adjournment

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Posted to Co-Cure Sat, 6 Jan 2001 19:50:50 -0500 by John Herd

The Name Change -- An Overview

[The opinions I am expressing are mine alone and are being made as an individual, not as an official statement of the Name Change Workgroup.]

THE NAME CHANGE WORKGROUP (NCW)

The Department of Health and Human Services (DHHS) and the CFS Coordinating Committee (CFSCC) were directed to address the issue of a Name Change. In order to do so they decided to establish an advisory Name Change Workgroup. It's important to note that the NCW is an advisory workgroup and that it has the authority to recommend, not enact, a Name Change. The final implementation of any Name Change will be up to others.

In order to form the workgroup, the government requested participant nominations from the patient and medical community. Nominees were then asked if the were willing to participate and if so to provide a letter pertaining to their acceptance and a resume/CV. Those materials were then reviewed, recommendations were made, and the final NCW members accepted positions.

The makeup of the Workgroup is:
      Leonard Jason, Ph.D. (research psychologist)
      Daniel Kahn, M.D. (physician/researcher)
      Nancy G. Klimas, M.D. (physician/clinical researcher)
      Charles Lapp, M.D. (physician/clinical researcher)
      Susan Levine, M.D. (physician/clinical researcher)
      John Herd (patient representative)
      K. Kimberly Kenney (patient representative)
      Carol Lavrich (patient representative)

And two assisting DHHS officials:
      Arthur Lawrence, Ph.D. (government official observer)
      Irene Stith-Coleman (government administrative coordinator)

Arthur Lawrence and Irene Stith-Coleman have been assisting the workgroup, but have not been directing the workgroup or trying to influence the activities of the workgroup.

COLLECTING INPUT AND INFORMATION

As soon as the Name Change Workgroup was established, the workgroup's patient representatives sent out notices requesting patient input. We compiled significant input from patients and advocates from both within the United States and around the world. While some elected not to respond, many did. Since then, the workgroup has continued to seek input from patients, advocates, and physicians. Continued input from any person will be accepted at the email address listed above for the duration of the activities of the Workgroup.

THE CHALLENGES OF GETTING A NAME CHANGE ADOPTED

There have been many replacement names proposed for CFS. Each seems to have its proponents and opponents. Many on some level have concrete foundations of reasoning behind them. At the same time, almost every name proposed has its weak points and reasons why some are opposed to it. There are three groups of stakeholders that will judge any name proposal: the patients and their families, the medical and research communities, and the government officials who will consider the NCW recommendation.

Many past Name Change surveys have shown no clear consensus of support for any singular name. Under the umbrella of the above three groups of stakeholders, it seems unlikely that there will be a clear consensus of support for any one given name. But if there is enough support for a specific name on scientific grounds to satisfy the power players in the medical community (those who will be influential) and enough public support from the patient community, it is possible that a Name Change can be successfully made. For example, one hypothesis is that amongst the patient community there has been more support for M.E. in one of its forms than any other name, yet within the medical and research communities there has not been the same support for M.E. If on the other hand, support from the medical community is achieved for another name, but the patient community strongly opposes it, this could be enough reason for the demise of any Name Change effort at this point in time. Ideally, we need all of the stakeholders to come together on ONE name or we will be stuck in a stalemate AND stuck with the name chronic fatigue syndrome for another decade.

Clearly almost any name would be better than chronic fatigue syndrome, but it would be ideal if some medical reasoning could be developed for changing the name. In part, we are looking for a name that is:

Not demeaning or easily misinterpreted by doctors or public at large;

  • That doesn't add to the misunderstanding about the condition;

  • That is an accurate descriptor of the overall CFS illness experience, the symptoms and/or physiology (if possible);

  • That is not inaccurate in itself, and will not be contradicted by past or future medical research.

IMPORTANT NOTE: No name can fit the bill entirely since the illness is still an enigma scientifically. A New Name alone should not be expected to carry the weight for potential misunderstandings that may exist about the illness now or in the future, or the necessity to educate physicians and the public about current accurate scientific information about the condition, or about diagnosis and treatment. For this reason, I believe it is imperative that a name change must occur in conjunction with a campaign to educate physicians about the condition and be conducted by DHHS and by physicians who have been conducting CFS treatment and research. If a new name is being adopted, there will likely be discussion about it in the medical community and possibly the public media. This would be a window of opportunity to conduct such a campaign to work towards the elimination of much of the misunderstanding about CFS. In turn, it could lead to far better access to medical care, diagnosis and treatment for those who suffer from the condition. It could also greatly influence how people with the condition are viewed and treated by the public and their families -- thereby improving the quality of life for those who are stricken by the disease. This is a challenge we must demand. We must make those who could accomplish this accountable for accomplishing it.

THE PROCESS OF GETTING A NAME CHANGE ADOPTED

As an advisory group to the CFS Coordinating Committee, the NCW will make its recommendations to that committee. At this stage I believe it will be important to have other patient and physician testimony and responses. This will be our next hurdle.

It will then be up to that committee to decide whether or not to accept those recommendations. (another hurdle) The CFSCC members will likely turn to others and listen to input before coming to a decision.

If they decide to support the NCW recommendations it is my understanding that the recommendations will then be sent up to the Secretary of Health, who may also seek additional input from members of the DHHS and possibly others in the medical community. (yet another hurdle) Here too I believe strong support of the patient community and physicians working on CFS will be important.

If the recommendations are adopted and acted upon by the DHHS, the next step will be getting it gradually understood and accepted by the medical community at large. This is where I feel an information campaign conducted by the government and by physicians who have been conducting CFS treatment and research is essential.

The task is not going to be easy but each and every aspect of it is going to have to be achieved if we are going to break free of the name CFS, the negative stigma it conveys, the misunderstanding, and see CFS research catch up with the rest of medical research.

I highly recommend that when considering various names to form your own conclusions, that you read Dr. Leonard Jason's research comparing how types of names are interpreted.

As I have in the past, I ask for your input and assistance in achieving these goals.

John Herd
Johnherd@johnherd.com

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