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A monumentous week for CFIDS

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Editor’s Note: The following article is reprinted with permission from The CFIDS Chronicle, Vol. 13 No. 1 Winter 2000.

Pressure mounts for CDC, NIH

Following is a summary of the events of the week of February 6 [2000], surely one of the most eventful in CFIDS history.

NIH hosts state of the science consultation

On February 6-7, the National Institutes of Health (NIH) held an internal “State of the Science Consultation” on CFS in Bethesda, Md. This meeting generated considerable anger among members of the CFS Coordinating Committee (CFSCC) and patient advocates because the CFSCC was not involved in the planning, the CFS community was not invited to observe and no CFS clinicians were asked to participate. In addition, the NIH-chosen CFS experts were three psychiatrists who have promoted controversial views about the diagnosis and treatment of CFS and Dr. Stephen Straus, who has become disinterested in pursuing CFS research because his original hypotheses did not pan out and new leads are outside his area of expertise.

As a result of the uproar, the participant list was expanded and no observer was turned away from the meeting. In addition, a true “State of the Science” meeting, with full participation by the CFS community in the planning, will be held in November. Dr. Anthony Komaroff, a CFSCC member and longtime CFS researcher from Harvard, will lead the planning committee, which will include members of the medical and patient communities.

The February consultation was not a referendum on psychiatric therapy for CFS, as many had feared. Dr. Nancy Klimas, a CFS expert and immunologist from the University of Miami, received a last-minute invitation in response to our criticism that the group did not include any CFS clinicians. Most of the other participants were not CFS experts, but represented related fields like fibromyalgia and Gulf War illness.

Dr. Gail Cassell, a microbiologist from Eli Lilly, served as moderator of the meeting and did an excellent job of keeping the participants focused on the biological aspects of the illness. Dr. Klimas shared her vast experience in CFS research and clinical practice and helped keep the meeting focused on meeting the needs of CFS patients through research. Kathy Rabin, a CFS patient from Massachusetts, provided a realistic and poignant view of her nearly 10-year battle with the illness (her statement is posted on the Association’s website at www.cfids.org/advocacy/rabin.html). Despite excellent medical care, she is only healthy enough to function for four to six hours on a “good day” and can’t work in her former career as an attorney. She gave an impassioned plea for scientists to explore the most promising leads toward finding the cure, the cause and effective treatments for CFS, and strongly suggested that “following the depression trail” would not uncover the answers to these questions.

The scientists were asked to make recommendations for the future direction of CFS research; the following were identified as priority areas: discovering a biological test; searching for pathogens that may cause or be associated with CFS; learning about the course of the illness (including studies of new-onset patients risk factors and complications of CFS); researching abnormalities in the endocrine, antiviral and immune systems and the hypothatlamic-pituitary-adrenal (HPA) axis; and exercise problems; using neuroimaging to look for brain abnormalities; and testing treatments (including antidepressants, cognitive behavioral therapy, Ampligen and other treatments patients use).

It is not clear how NIH will use the information gathered at this meeting. Dr. Donna Dean, from NIH’s Office of the Director, reported that it was an important “first step” toward her assigned charge on increasing cross-NIH interest in CFS research and boosting the overall CFS research effort.

CFS Coordinating Committee meeting held

The following day (February 8) the Department of Health and Human Services (DHHS) CFS Coordinating Committee (CFSCC) met in Washington. Dr. Dean announced that the committee management would be moved from the National Institute of Allergy and Infectious Disease (NIAID) to the NIH Director’s office. Janice Ramsden, assistant to Acting NIH Director Ruth Kirschstein, will take over executive secretary duties from Dr. David Morens, who assumed this role last year.

When Surgeon General David Satcher joined the meeting, Kim Kenney read a statement from several CFSCC appointees asking for his increased attention to and participation in CFS activities in general and the CFSCC’s work in particular (this statement is on the Association’s webstite at www.cfids.org/advocacy/satcher2-00.html). Dr. Satcher stated that his busy schedule prevents him from attending the entire CFSCC meetings, but the trusts that his staff will report the Committee’s activities to him.

The Center for Disease Control and Prevention (CDC) announced that in 2002 the U.S. diagnostic code for CFS will be moved from “General symptoms—Malaise and fatigue” (780.71) to “Other disorders of the brain” (G93.3), which is the code the World Health Organization (WHO) established in 1992 for CFS, post-viral fatigue syndrome and benign myalgic encephalomyelitis. In 1998 the U.S. created a separate code (distinct from the WHO code) for CFS. Dr. Klimas, Kim and I worked closely with the National Center for Health Statistics over the past 18 months to provide scientific evidence supporting our position that the U.S. should adopt the WHO designation, providing worldwide consistency in CFS classification and a more scientifically appropriate code for CFS. Hopefully this coding change will have a positive impact on insurance reimbursement and validation of CFS.

The CDC also presented its plan for “reinvigorating” its CFS program, based on advice from external peer reviewers (see page 18) and the CFIDS advocacy community (Nov/Dec ’99 Chronicle). Dr. William Reeves announced that CDC will initiate a national CFS survey; a registry of CFS patients; a revision of the CFS case definition (based on medical evidence); and research on endocrine and sleep abnormalities, pathogenic agents, environmental exposures and brain imaging. CDC will also expand its collaborations with other scientists, look into the quality of life of CFS patients, investigate reported clusters in occupations and families and launch a national CFS information campaign directed at health care providers (see next section). Dr. Reeves also reported that CDC is working on 17 articles for the peer review literature on CFS. CDC’s report on its new CFS-related initiatives and a summary of the peer-reviewers’ recommendations are being posted on the Internet at www.cdc.gov/ncidod/diseases/cfs/studies.htm.

Physician education work funded

On February 9, CFIDS Association President & CEO Kim Kennedy met with representatives from CDC, the Health Resources and Services Administration (HRSA) and the Illinois Area Health Education Center (AHEC) to discuss funding and implementation of a medical training curriculum on CFS. The curriculum materials were developed by an advisory committee led by the Association and the Illinois AHEC to expand recognition, diagnosis and quality care of CFS by primary care practitioners.

CDC strongly commended the group’s work, so much so that they agreed to fully fund a grant to test and implement the curriculum through a train-the-trainer series of workshops. Since the question we hear most often from CFIDS patients is, “where can I find a doctor who understands CFIDS?,” The CFIDS Association is very excited about this opportunity to reach out directly to health care providers to teach them how to improve their care of persons with CFIDS.

CDC investigation heat up – again

On February 2, the Washington Post broke a story that the CDC’s diversion of research funds was not limited to its CFS program – CDC also misinformed Congress about the amount of money it was spending on hantavirus, a killer virus studied in the same CDC division as CFS.

The House of Representatives’ Labor, Health and Human Services, Education and Related Agencies (Labor /HHS) Appropriations Subcommittee already had hearings scheduled with DHHS Secretary Donna Shalala and CDC Director Jeffery Koplan for the week of February 7, so the Post story appeared at the perfect time for Congressmen to grill them about the reports of fund diversions.

On February 8, Secretary Shalala apologized to the Labor/HHS Committee for what she termed “timely reallocations” of CFS and hantavirus research funds and said she was taking “unprecedented and aggressive action” to ensure that reports to Congress are accurate. Chairman John Porter (R-Ill.) told the Post that he remains concerned about “the culture” at CDC. “There is something going on within this institution that leads to a cavalier approach” in its reporting to Congress, he said. “This raises questions as to what other inaccuracies there might be.” In response to a question from representative Rosa DeLauro (D-Conn.), Shalala said she had communicated prior corrective measures to the CFSCC and the CFIDS community, although numerous requests for a meeting with her from The CFIDS Association have gone unanswered.

On February 10, Dr. Koplan told the Labor/HHS Committee that the had ordered an independent audit of all CDC’s programs and that Dr. Brian Mahy, who was pinpointed by the Inspector General as responsible for the diversion of CFS funds, had been “reassigned” from his duties as Director of the Division of Viral and Rickettsial Disease (DVRD) at CDC and James LeDuc will take over this position and the $45 million budget Mahy formerly managed. Dr. LeDuc is a virologist with 25 years’ experience, including several years fighting bioterrorism and viral infectious diseases and promoting international health issues at CDC’s National Center for Infectious Diseases (NCID), which oversees DVRD and the CFS program.

Rather than delivering a prepared presentation, Koplan answered questions from Committee members. Representative David Obey (D-Wis.) suggested that CDC did not take CFS seriously, which disturbed him greatly since he had a former staffer commit suicide because of the disability related to CFS. CDC “has an obligation to have the guts to come up here and explain to Congress” how it uses its funds, Obey told Koplan. Representative Jay Dickey (R-Ark.) stated he was “losing confidence” in CDC and Representative Henry Bonilla (R-TX.) asked whether the diversion of funds was intentional or based on stupidity; Koplan agreed that it wasn’t a very intelligent decision. Represenative Nita Lowey (D-N.Y.) expressed her concern about the progress of science on CFS, given her long-standing interest in the needs of patients. Koplan assured her that the research was on-track and that new personnel in the CFS program and the impending publication of the Wichita prevalence study would significantly boost the CFS program.

In addition to the Labor/HHS Hearings, two House subcommittees are considering their own investigations. On February 8, Representative Thomas Bliley (R-Va.) chairman of the House Commerce Committee, and Representative Fred Upton (R-Mich.), chairman of the Commerce Subcommittee on Oversight and Investigations, sent a letter to Koplan stating that the reports of fund diversions “raise grave questions about the management of funds” at NCID. In their letter they requested documents related to Dr. Mahy’s travel expenses, a February 1 independent audit of CDC’s FY99 CFS program (which showed that $53,207 couldn’t be accounted for last year) and all documents submitted to Congress over the past 11 years related to NCID’s programs. The Commerce Committee is planning to take these issues up with CDC at a Hearing this spring. On February 10, Representative Dan Burton (R-Ind.) announced that his House Government Reform Committee is considering its own Hearing.

The Senate has gotten involved, also. Following the February 2 Post story, Senators Arlen Specter (R-Pa.) and Tom Harkin (D-Iowa) called for an expanded GAO audit of CED and Senator Harry Reid’s (D-N.V.) request for a Department of Justice investigation of possible criminal activity related to lying to Congress remains open.

Lobby Day may be moved

In order to take best advantage of events in the CFIDS community, we are considering rescheduling our annual Lobby Day from its traditional May 12th timeframe into June to take advantage of the release of a report about he GAO’s investigation of CDC’s and NIH’s CFS research programs. We will make a decision about Lobby Day dates in March. For the most current information, check out the Association’s website at www.cfids.org/advocacy/ld00.html, send your name and address with a request for “Lobby Day Info” to the Association’s mailing address or e-mail to c-act@cfids.org.

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