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CDC Director Takes Charge of CFS Issues
by Roger Burns, publisher of CFS-NEWS

At a meeting with CFS leaders last on Oct. 13, CDC Director Jeffrey Koplan said he would take direct charge of financial reform as well as a program to reinvigorate CFS research at his agency. Questions about why the financial scandal happened and about scientific bias were set aside by the Director, who promised to work personally to create a better future for CFS at the agency.

Most CFS leaders who attended the meeting welcomed these statements by Director Koplan, but nonetheless felt that a decade of distrust can only be overcome with the actual experience of real progress, not just promises.

The following were highlights of the meeting:

  • All CDC officials who attended the meeting apologized individually for the financial scandal.

  • When Dr. Brian Mahy was asked pointed questions about why he diverted the money, Director Koplan said that all such questions should be directed to him and that he would take personal responsibility for these issues.

  • The CDC's CFS case definition would be revised starting next year.

  • Children and school issues were discussed, including:

    • The need for more pediatric research, and the study that was canceled as a result of the financial scandal must be renewed.

    • There is a real and present danger of children being removed from their parents.

  • The following requests were posed by various CFS leaders:

    • The CDC should actively work to legitimize CFS with announcements to the media, and by publicly answering disparaging claims in scientific journals such as the recent attempts to classify CFS as being merely a functional somatic syndrome.

    • Myalgic Encephalomyelitis (M.E.) should be officially recognized by the CDC and it should play a role in the revised definition of CFS.

    • Precious time has been lost on CFS research due to the diverted funds and for other reasons; patients have paid dearly for this lack of progress; the CDC efforts must be redoubled to overcome this loss.

    • The CDC should fund much outside on CFS.

    • The name CFS should be changed.

    • CDC should officially recommend that CFS patients be barred from donating blood, due to the possibility of contagion.

    • The CDC's reports on their investigations of clusters of CFS should be published, and the possibility of an infectious process should be made clear.

    • In general the CDC should receive advice from a broad array of leaders and not just one organization.

    • The CDC should respond by reporting on all of its new plans at the upcoming Nov. 2 meeting of the CFS Coordinating Committee in Washington.

  • Dr. Mahy was present and expressed deep regret for the trouble that occurred, however he said there was no deliberate attempt to target CFS research funds. He went on the recount how he had hired Dr. William Reeves and approved his various scientific projects which are now making good progress on addressing CFS.

  • Concerns were expressed that the financial scandal has politicized CFS research within the CDC and research has actually been impeded. Dr. Reeves noted that his chief epidemiologist is leaving and it has been difficult to fill the upcoming vacancy.

  • Officials were asked why deaths due to CFS/M.E. are ignored by the CDC. The reply was that such reports must be conveyed to the CDC by state-level public health departments (the implication being that the question must be posed there).

  • There were controversies about whether the CDC acted appropriately regarding Elaine DeFreitas' 1990 research on retroviruses in CFS, and regarding lost or missing blood samples from the 1985 Lyndonville outbreak. The CDC denied impropriety about the DeFreitas issue, and said hey had no knowledge of the Lyndonville blood samples.

  • The CDC's Dr. William Reeves discussed future research including a registry of CFS patients for long-term studies. A detailed research plan will be presented at the Nov. 2 meeting of the CFS Coordinating Committee.
Director Koplan made a concluding statement where he asked everyone to understand that the CDC as an agency has many limits, it does not do basic science research -- that is assigned to the National Institutes of Health -- so the CDC cannot search for a cure. The CDC can do clinical trials, molecular research, and prevention.

Koplan cautioned that his agency won't be able to agree to all proposals, especially if some leaders should be making opposite proposals. It is inevitable that the CDC will make some decisions that will disappoint some people. However, the apologies are sincere, the full amount of funds has been restored, and the Director is giving his personal assurance that financial management is being reformed and CFS science program will be reinvigorated.

During the meeting, Pat Blankenship of Georgia stated that the CDC needs to make a clear cut plan for CFS research with definite goals and who will be responsible for executing the plan. Pat requested that the CDC take an active role in publicly countering the psychological views of CFS that may appear in scientific journals, such as the various recent articles on functional somatic syndromes (this request was strongly backed up by Jill McLaughlin and others). Pat also called for the factual errors in the CDC's Facts booklet and their web page be corrected. She also said that it will important for the CDC to accept advice from a broad variety of leaders, and that no one organization represents the interests of the entire CFS community.

Jill McLaughlin of the National CFIDS Foundation repeatedly pressed CDC officials to admit to their agency's bias about this illness. Jill also asked that the CDC officially recognize myalgic encephalomyelitis (M.E.) as a separate and distinct illness, and Director Koplan said that would be considered. Jill said that known deaths due to CFS/M.E. were not being recognized by the CDC, and that the agency has an obligation to publicly counter biased views of CFS.

Dr. Nancy Klimas of the University of Miami made the point that the interrupted research was a great loss to patients, that CDC should fund a lot of extramural grants, and that the CDC's apology should be clear and absolutely unequivocal.

Roger Burns, publisher of CFS-NEWS, proposed that the CDC undertake a strong campaign to legitimize CFS, that the key M.E. criterion be part of the new subgroups, and that an alert be issued about blood donations from CFS patients.

Bob Mulligan of the Georgia CFS Association demanded to know how the CDC research program on CFS can have any credibility if Dr. Mahy remains in charge of the program, but officials gave no response. Mulligan requested that the CDC acknowledge cluster outbreaks of CFS. He also made the challenge that CDC scientist Walter Gunn (now retired) had in fact verified the 1990 retroviral research of Elaine DeFreitas. Dr. William Reeves countered this by saying that Gunn's own report showed negative results, and it had been published by the CDC back at that time.

Pat Fero of the Wisconsin CFS Assoc. discussed the need to educate school system administrators about CFS, and that children are in danger of being removed from their parents because this illness is not accepted.

Rebecca Moore of the CFIDS Assoc. Youth Program discussed the importance of developing pediatric research.

Jon Sterling of the New Jersey CFS Association insisted that Dr. Mahy should answer questions about the scandal, and he expressed concerns about the politicized research environment.

Kim Kenney of the CFIDS Association of America noted that CFS research has now been politicized within the CDC and that may impede research. Kim also pressed Dr. Brian Mahy for a further explanation of why the financial diversion occurred.

Meghan-Morgan Shannon of the Medical Professionals with M.E. (MPWMEs) group pressed CDC officials to admit that CFS is infectious, that the public must be educated about CFS and not only doctors, and that CDC made a serious error in defining and naming the disease as it is currently. Meghan also strongly supported the concerns about children being endangered due to the illegitimacy of this illness.

Aba Heiman, a disability attorney who had previously asked at the U.S. CFS Coordinating Committee (CFSCC) that the CDC accept broad input from the CFS community, made a request that the CDC make a full presentation of its responses to the current requests at the next CFSCC meeting on Nov. 2.

This meeting was covered by news reporters from the Associated Press and CNN. A news segment on CFS will be shown on CNN on Sunday, Oct. 24 at 9 PM and again at midnight, Eastern time.

[Thanks for assistance with this article go to Vicki Walker, Pat Blankenship, Jill McLaughlin and Meghan-Morgan Shannon. Any errors in this report are mine alone.

A revised version of this report will appear in the CFS-NEWS newsletter. I ask everyone who attended this meeting to please send me additions and corrections as soon as possible (send to cfs-news@cais.com). -- Roger Burns]

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From: "Vicki C. Walker" vwalker@cfids.org

FOR IMMEDIATE RELEASE
July 13, 1999
Contact: The CFIDS Association of America
800/442-3437
info@cfids.org

GENERAL ACCOUNTING OFFICE LAUNCHES INVESTIGATION ON FINANCIAL MISMANAGEMENT AT CENTERS FOR DISEASE CONTROL AND PREVENTION

CFIDS Association, Members of Congress Demand Explanation for Misuse of Chronic Fatigue Syndrome Research Dollars

Washington, DC-Today, as a result of a May 10, 1999 Inspector General's audit that the Centers for Disease Control and Prevention (CDC) had diverted millions of dollars of Chronic Fatigue Syndrome (CFS) research money to other areas, the General Accounting Office (GAO) has assembled a team to dig deeper into the misuse of Congressionally appropriated money and CDC's attempt to cover-up the diversion.

"We have fought very hard for every research dollar to help CFS patients and to see it mishandled and misused is a disgrace," said Kim Kenney, Chronic Fatigue and Immune Dysfunction Syndrome Association (CFIDS) Executive Director. "We are pleased the GAO will investigate the lack of progress in the CFS program."

The CDC reported to Congress that it spent almost $22.7 million for CFS research, but the Inspector General's report showed only $9.8 million or 43 percent of the funds, was used for that purpose. More than $8.5 million was diverted to non CFS-related research, and $4.1 million is still unaccounted for. The GAO is now beginning the process to evaluate the consequences of the CDC's actions.

According to the report, during fiscal years 1995 through 1998, the CDC ".spent significant portions of CFS funds on the costs of other programs and activities unrelated to CFS and failed to adequately document the relevance of other costs charged to the CFS program."

"The CFIDS Association is grateful to Senator Harry Reid (D-NV) and Congressman John Porter (R-IL) for leading efforts to unveil the mismanagement of CFS research money by the CDC," said Kenney.

"This investigation will give the American people a clear view to the extent that the CDC has run amok. They have betrayed the trust of CFS patients, their families, Congress and the American people when they took it upon themselves to divvy up taxpayer dollars for other purposes. Without this level of scrutiny, the people responsible for this at CDC could continue to undermine progress."

-XXX-

CFS is defined as a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS function at a substantially lower level of activity than they were capable of before the onset of the illness. CDC estimates more than 500,000 Americans are suffering from CFS today.

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398
Voice Mail: 800/442-3437 Fax: 704/365-9755
WWW: http://www.cfids.org General E-mail: cfids@cfids.org

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From: "Vicki C. Walker" vwalker@cfids.org

July 22, 1999

The General Accounting Office (GAO) has told CFIDS Association officials and members of the media that their study of the government's CFS research program will extend beyond CDC to the National Institutes of Health (NIH). This expansion of the original audit was requested by The CFIDS Association of America, Sen. Reid, and CFIDS advocates.

Although the specific questions the GAO seeks answers to have not been finalized, we are very pleased that GAO has accepted our recommendation to look into the lack of support for CFS research at NIH. More information will be reported to C-ACT and members of The CFIDS Association of America as it comes available.

Vicki Carpman Walker
Public Policy & Youth Outreach Coordinator
Research Grants Officer

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community
PO Box 220398, Charlotte NC 28222-0398
Voice Mail: 800/442-3437 Fax: 704/365-9755
WWW: http://www.cfids.org General E-mail: cfids@cfids.org

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CDC Director makes statement on scandal

by Roger Burns

On Wednesday, July 21, the Director of the CDC, Dr. Jeffrey Koplan, telephoned several leaders in the CFS community to convey an apology for the diversion of CDC funds away from CFS research, and to state his intention to rectify the matter. The leaders that were phoned included, at a minimum: Kim Kenney of the CFIDS Association; Gail Kansky of the National CFIDS Foundation; and Roger Burns, publisher of CFS-NEWS.

The next day, a broader group of leaders were faxed a written statement from Director Koplan about the CDC scandal. The text of the statement is copied below. The place in the cover letter's text where the organization being addressed was mentioned is left blank in the version below, since the cover letter was tailored to each group it was sent to.


July 22, 1999
Office of the Director
Centers for Disease Control and Prevention (CDC)
Atlanta GA 30333

The Centers for Disease Control and Prevention (CDC) relies upon the support of the U.S. Congress, the American people, and organizations like ________ to effectively carry out it many responsibilities and efforts to fulfill its public health mission.

I personally apologize for the breach of trust that occurred regarding the CDC's chronic fatigue syndrome (CFS) resources. We are making unprecedented, agency-wide changes and improvements to prevent this type of incident from happening again (please see enclosure). I am also reinvigorating our efforts to increase our knowledge about CFS and its effects on the lives of those persons who must meet this health challenge on a daily basis.

CDC is committed to restoring your faith in the integrity of this agency and the work that we do. We appreciate your support and look forward to strengthening our partnership to improve the health of Americans nationwide.

Sincerely,

Jeffrey P. Koplan, M.D., M.P.H.
Director

Enclosure


CDC Response to
Chronic Fatigue Syndrome

The Centers for Disease Control and Prevention (CDC) is a public health agency that relies upon the support of the U.S. Congress and the American people to carry out it many responsibilities. This trust is crucial to the agency's effectiveness since its public health programs are largely built upon voluntary partnerships and the cooperation of individuals, communities, health care practitioners, and researchers. As a reflection of that foundation of trust, the agency's three core values are accountability, respect and integrity.

In August 1998, in response to allegations that funds had been misspent, the Director of the CDC requested the Department of Health and Human Services Office of the Inspector General (OIG) to audit costs charged to the Chronic Fatigue Syndrome (CFS) Program. The audit and resulting internal report, "Audit of Costs Charged to the Chronic Fatigue Syndrome Program at the Centers for Disease Control and Prevention," concluded that CDC mismanaged CFS resources and provided misleading information to Congress. Resources intended for CFS were actually used for measles, polio and other disease areas.

This was a breach of CDC's solemn trust and is in direct conflict with its core values. CDC is committed to restoring the trust of Congress and its state and national public health partners and is moving aggressively to make the specific and agency-wide changes necessary to prevent such mismanagement in the future. Concurrently, the agency is reinvigorating its efforts to better understand CFS and its effects on the lives of those persons who must meet this health challenge on a daily basis.

The findings of this report have been taken very seriously. To demonstrate and reinforce CDC's personal commitment to addressing this matter, unprecedented actions are being taken that not only include all of the recommendations of the OIG, but go well beyond those recommendations. These actions include:

  • A public apology from the Director of the CDC and other senior staff;

  • Restoration over the next four years of CFS program funds spent on other public health issues;

  • Probationary status for the offending Division with regard to budget execution until January 2001;

  • Separate apportionment of CFS funds from the Office of Management and Budget with the accompanying requirement that an operating plan be submitted to Congress. Accordingly, quarterly reports will be submitted to Congress regarding the budgetary execution of this plan;

  • Mandatory training for all CDC managers and staff responsible for budget and accounting functions to ensure complete knowledge of statutory and regulatory requirements for use of Federal funds;

  • Establishment of an internal review capacity to conduct regular assessments of CDC's fiscal policies, procedures, practices, and controls;

  • Development and implementation of a new system for allocation of CDC-wide indirect program support costs; and

  • Reinvigoration of CDC's efforts to better understand CFS by establishing a long-term research and program agenda with in-depth advice from the research and advocacy community.
CDC is a valued agency with a long and distinguished history of service to the American people. Corrective actions, such as the ones described above, are the most far-reaching in the half-century history of the CDC. Staff from every CDC program will know of these actions.

We have learned a valuable lesson through this experience, which will not be forgotten as we continue to protect the public's health.

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FOR IMMEDIATE RELEASE
July 28, 1999

CENTERS FOR DISEASE CONTROL ADMITS MISUSE OF CHRONIC FATIGUE SYNDROME RESEARCH MONIES

Special Briefing Called to Discuss IG Audit of Diverted Research Money Charged to CDC's CFS Program

WASHINGTON DC- In an opening statement yesterday read at The Chronic Fatigue Syndrome Coordinated Committee (CFSCC), the Centers for Disease Control (CDC) admitted to diverting millions of dollars of Congressionally directed Chronic Fatigue Syndrome (CFS) research money to other areas and then covering up the diversion.

"Resources intended for CFS were actually used for measles, polio and other disease areas. This was a breach of CDC's solemn trust and is in direct conflict with its core values," said Martha Katz, Deputy Director for Policy and Legislation at CDC.

CFSCC members, officials from the Centers for Disease Control (CDC) and the Inspector General's (IG) office gathered Monday for a special briefing to discuss the recent IG's audit of the misused CFS money and agreed on recommendations for how to resolve the situation and prevent mismanagement from reoccurring.

"We're concerned that the CDC's plan doesn't go far enough," said Kim Kenney, Executive Director for The Chronic Fatigue and Immune Dysfunction Syndrome Association of America (CFIDS) and a CFSCC Member appointed by Health and Human Services Secretary Donna Shalala. "The Committee's recommendations reflect a stronger response to CDC's mismanagement and appalling betrayal of public trust."

The May 10, 1999 IG report confirmed that the CDC "spent significant portions of CFS funds on the costs of other programs and activities unrelated to CFS." The report went on to say that "CDC officials provided inaccurate information to Congress regarding the use of CFS funds, and have not supported the CFS program to the extent recommended and encouraged by Congress."

At the meeting IG auditor Jeffrey Bullock stated that CDC used CFS research funds to "balance the books at the end of each fiscal year." Whistleblower Dr. William Reeves of CDC reported that since making charges of fiscal mismanagement, he has experienced retaliatory actions, from which he should be protected. He has filed a lawsuit against CDC but continues to lead CFS studies for the agency.

In later discussion, Committee members agreed to recommendations which will formally be made to Secretary Shalala. These recommendations will:

  • Reinstate the $12.9 million misused between FY '95 -'98 over the course of Fiscal Years 2000, 2001, 2002, 2003.

  • Require the CDC's Office of the Director to oversee the CFS program's budget and implementation of these programs for the next four fiscal years and that the operating plan and subsequent quarterly reports be given to Congress and shared with the CFSCC.

  • Keep the CFS program within the Division of Viral and Rickettsial Diseases while dialogue and plans for the future of the CFS program at CDC continue.

  • Direct restored funds to be used for CFS public education programs with an emphasis on general public service announcements and specialized efforts to educate primary care providers about CFS.

  • Support a General Accounting Office study to expand the IG's audit by conducting a thorough review of the track record and course of CFS research at the CDC and NIH.

"These recommendations are just the first steps to remedy this situation and will hopefully squash any further abuse of CFS research efforts by the CDC, " Kenney said.

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From: "Vicki C. Walker" vwalker@cfids.org

FOR IMMEDIATE RELEASE
October 7, 1999

CONGRESS DIRECTS CDC TO RESTORE FULL FUNDING FOR MISUSE OF CHRONIC FATIGUE SYNDROME RESEARCH MONEY

House, Senate Labor HHS Bills Allocate $12.9 Million Over Four Years

WASHINGTON DC- Both the U.S House of Representatives and the U.S. Senate late last week included language in their versions of the Labor HHS Appropriations bill that would direct the Centers for Disease Control (CDC) to restore the $12.9 million in Chronic Fatigue Syndrome (CFS) research money it misused.

The CDC originally reported to Congress that it spent almost $22.7 million for CFS research over a four-year period, but a May 1999 Inspector General's (IG) report showed only $9.8 million or 43 percent of the funds was used for that purpose. About $8.8 million was diverted to non CFS-related research, and the CDC still cannot account for the additional $4.1 million. In July, the General Accounting Office assembled a team to evaluate the consequences of the CDC's actions. Its report is expected in May 2000.

In an attempt to make reparations, the CDC announced it was willing to restore $8.8 million. However, both the House and Senate versions of the bill direct restoration of the full $12.9 million, which includes the $4.1 million still undocumented.

"The Committee is disappointed that a confluence of factors has resulted in an unfortunate outcome that has strained the reputation of a leading public health agency," the Senate version of the bill reads. "It is regrettable that certain actions taken has clouded that relationship between Congress and the agency."

"People suffering with CFS deserve to have the full amount of the misused research money invested in CFS research and education activities," said Kim Kenney, Chronic Fatigue and Immune Dysfunction Syndrome Association (CFIDS) of America's Executive Director. "Restoring the money is the first step, but we have a long way to go to ensure the money will be used wisely and that an incident like this never happens again."

XXX

CFS is a debilitating and complex disorder characterized by profound fatigue, pain and cognitive problems that are not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS function at a substantially lower level of activity than they were capable of before the onset of the illness. CDC estimates more than 500,000 American adults and youth are suffering from CFS today. Public inquiries can be directed to 800-442-3437.

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398
Voice Mail: 800/442-3437 Fax: 704/365-9755
WWW: http://www.cfids.org
General E-mail: cfids@cfids.org

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