week for CFIDS
Pressure mounts for
By Vicki C. Walker
is a summary of the events of
the week of February 6, surely one of the most eventful in CFIDS history.
NIH hosts state of the science consultation
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 long-time CFS researcher from Harvard, will
lead the planning committee, which will include members of the medical and patient communities.
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
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, a CFS patient from Massachusetts, provided a realistic
and poignant view of her nearly 10-year battle with the illness.
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 recommen-dations 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 hypothalamic-pituitary-adrenal (HPA) axis; finding an animal model of CFS;
studying sleep and exercise problems; using neuroimaging to look for brain abnormalities; and testing
treatments (including antidepressants, cognitive behavioral therapy, Ampligen and other treatments patients
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 of increasing cross-NIH interest in CFS research and boosting the overall CFS research effort.
CFS Coordinating Committee meeting
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 Diseases (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
website at www.cfids.org/advocacy/satcher2-00.html). Dr. Satcher
stated that his busy schedule prevents him from attending the entire CFSCC meetings, but he trusts that
his staff will report the Committee's activities to him.
The Centers 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
Research News this issue) 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 http://www.cdc.gov/ncidod/diseases/cfs/reseach/research7.htm.
Scientific presentations on sleep disorders in fibromyalgia
and treatment studies in Gulf War patients were presented. Dr. Joan Shaver, who also participated in the
NIH Science meeting, stated that they have been able to reproduce the symptoms of fibromyalgia by depriving
healthy women of deep-stage sleep, and that there seems to be an important interaction between sleep and
the endocrine system in fibromyalgia. Drs. Sam Donta and Joe Collins reported on two large-scale Department
of Veterans Affairs-funded studies they are working on-one on doxycycline treatment of mycoplasma infections
and the other on cognitive behavioral therapy and exercise-for treatment of Gulf War illness.
the first time a Congressman attended a CFSCC meeting-Representative Bob Filner (D-Calif.) spoke about
the CDC scandal and the need for improved patient care.
The CFSCC made plans to meet again in July
to discuss the General Accounting Office's (GAO) report on the NIH's and CDC's CFS research programs.
In contrast to 1999, when CFSCC members had to pressure DHHS to meet following the Inspector General's
report of CFS misspending at the CDC, this year government representatives proposed the meeting. A regular
CFSCC business meeting will also be held in November.
Physician education work funded
February 9, CFIDS Association
President & CEO Kim Kenney 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
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 investigations 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.
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
Jeffrey 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 he had ordered an independent audit of all of 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 Diseases (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-Tex.) asked whether the diversion of funds was intentional
or based on stupidity; Koplan agreed that it wasn't a very intelligent decision. Representative Nita Lowey
(D-NY) 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
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 docu-ments 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 CDC and Senator Harry Reid's (D-Nev.) request for a Department of Justice investigation of possible
criminal activity related to lying to Congress remains open.
Lobby Day may be moved
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 the 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, send
your name and address with a request for "Lobby Day Info" to the Association's mailing address or e-mail
Walker is Research
and Public Policy Project Manager for The CFIDS Association of America.