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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