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NIH "State of the Science" Meeting
on CFS

The NIH report of the NIH CFS Consultation held on February 6-7, 2000

NIH State of the Science Consultation

By Vicki C. Walker of the CFIDS Association of America

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 CFIDS 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 hold 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.

The February consultation was not a referendum on cognitive behavioral therapy for CFS, as many had feared. Some participants reported being "inhibited" by the scrutiny of the patient community, which may have caused the more controversial participants to tone down their remarks. 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 R., 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 hypothalamic-pituitary-adrenal (HPA) axis; finding an animal model of CFS; studying problems with sleep and exercise; using neuroimaging to look for brain abnormalities; and testing treatments (including antidepressants, cognitive behavioral therapy, Ampligen and other treatments patients are using).

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.

[Report taken from C-Act E-Mail message from Vicki Walker dated 2-16-2000.]

Report on Day One of the Meeting, Feb. 6, 2000:

By Roger Burns, Publisher, CFS-NEWS

This is an initial and very brief report on the first day of NIH's State of the Science meeting. This report is not at all intended to be complete.

Dr. Stephen Straus of NIH was asked to make a presentation on where he thought CFS research should go now. Comments from other scientists who were participating were invited in response to Dr. Straus' presentation. He outlined his view of needed next steps in CFS research as follows:

  • Epidemiological study of new onset of CFS in various populations

  • Broader clinical, epidemiologic, and behavioral comparisons of CFS and similar syndromes

  • Prospective study of natural history of CFS (i.e. take blood specimens of thousands of healthy people now, and later take similar specimens of the few who later comed down with CFS; then search for what has changed)

  • Search for microbial agents using differential display technologies

  • Gene expression studies using micro arrays

  • Meaningful studies of brain imaging

  • Better studies of sleep abnormalities

  • Studies of exercise to identify physiologic correlates of symptoms and performance

  • Large controlled analyses of the HPA axis

  • Blinded studies in the 2'5' oligo A pathway (Suhadolnik's work)

  • Definitive trials of antidepressants, cognitive therapy and exercise

Straus said that he personally did not believe that many of these studies might yield positive results, but they nonetheless needed to be done for the sake of "good science" in order to provide adequate proof that various theories were not viable. In particular, Straus said that evidence to date pretty much shows that CFS is not caused by a microbe, and also that exercise does help the condition.

Dr. Helen Mayberg, a brain scan expert, said that such scans cannot now indicate fatigue since that symptom has been so poorly researched and defined up til now.

Dr. Simon Wessely commented that there would not likely be a cure for CFS in his lifetime. Dr. Barry Wilson added that he believed that the discovery of a diagnostic biomarker for CFS should surely be possible.

There was a presentation by CFS patient Nancy Raven about the personal experience of having the illness. Ms. Raven is a graduate of Harvard Law School and was formerly an assistant district attorney, but is now disabled by CFS. She seemed to be really effective in striking a sympathetic chord with everyone who was present. She concluded by asking for more research into the cause and treatments, greater public education, and a change of name for the illness.

Much more more was discussed at this session than is described in this brief summary.

Since this meeting was for scientific consultation, no input from the audience was accepted. Audience attendees included Kim Kenney, Jon Sterling, Tom Hennessy, Jill McLaughlin, Meghan Shannon, Paula Carnes, and a reporter from the New York Times.

The meeting continues on Monday at 7:30 AM. Other Washington events this week: on Tuesday there will be a meeting of the U.S. CFS Coordinating Committee, and on Wednesday the U.S. Congress will publicly question CDC officials about the diversions of funds for research for hantavirus and CFS.

-- Roger Burns
Publisher of CFS-NEWS
http://www.cfs-news.org/news.htm

Preliminary Report on NIH Meeting and CFSCC Meeting:

by Vicki C. Walker of the CFIDS Association of America
The National Institutes of Allergy and Infectious Diseases (NIAID) "State of the Science Internal Consultation" was held as planned, Feb. 6-7. So we can report to our members the events of these important meetings as quickly as possible we have decided to "hold" the next issue of The CFIDS Chronicle a week. If you are an Association member you can expect a longer report in your mailbox in 3-4 weeks.

Since there has been so much interest in the events this week, I've quickly written the following "highlights" of the State of the Science (SOS) meeting, the CFS Coordinating Committee (CFSCC) meeting, and Labor/HHS Appropriations hearing, which all occurred this week.

1. Preliminary report on SOS and CFSCC meetings

  • The chairwoman of the SOS meeting, Gail Cassell, did an exceptional job keeping the meeting on track. Every time the meeting started heading down the "psychosomatic" pathway, she brought the discussion back to the biological aspects of CFIDS.

  • In truth, the psychological aspects were not addressed very much at the SOS meeting. The search for a biological marker and/or a microbial cause; better studies of the course of the illness, risk factors and new-onset patients; and unbiased studies of the antiviral pathway, exercise, sleep, brain imaging and various treatments, were highly recommended, while CBT was only mentioned once in the context of "proving" whether or not a variety of therapies work.

  • Kathy R., a CFIDS patient who has been sick for nearly 10 years, spoke eloquently to the scientists on behalf of the patient's experience. She talked about her unsuccessful attempts to return to work and the help she has gotten from a pain specialist, a physical therapist, a counselor and her primary care doctor. When one of the scientists suggested that her regimen was similar to the "cognitive behavioral therapy" (CBT) approach he uses, she responded that her doctors have helped her "cope" better with CFIDS, but haven't cured her. Patients get defensive about CBT, she said, because they hear the doctors say it will "cure" CFIDS, and they know that is not true. Even with all of the excellent care she has gotten, on a good day Kathy can only be out of bed for 8 hours, and functioning for 4-6 hours. Her exercise regimen (after more than a year of physical therapy) is limited to swimming 1/3 mile over the course of an hour, and many days she can't swim nearly that far.

  • Kathy also recommended that the scientists not "follow the depression trail" in their search for the cause and cure. Chronic illness is depressing, and it helps not to be depressed, she said, but she thinks this would be a dead end. Since she desperately wants to get better, she hopes that the scientists will pursue more promising avenues. On her "wish list" for the scientists is: a cure; effective treatment; a diagnostic test; education of the public; a more appropriate name.

  • It was announced at the CFSCC meeting that in 2002, the U.S. ICD code for CFS will be changed to conform to the code used by the rest of the world -- G93.3, in the neurological disease category. Last year, the U.S. temporarily added a code for CFS in the "Signs, symptoms and ill-defined conditions" chapter.

  • A committee of the CFSCC and others will be formed to organize a true "State of the Science" meeting later this year, with input from the CFIDS community. (See below for information about participating in this workgroup.) The planning committee will be led by Dr. Anthony Komaroff of Harvard University and a member of the CFSCC. The meeting will be held in November, in conjunction with the CFSCC meeting, since Dr. Komaroff feels a minimum of eight months is needed to execute a conference such as this.

  • The CFSCC will meet again in July to discuss the General Accounting Office (GAO) audit of the CDC and NIH research programs, which will be delivered to Senator Harry Reid in June. Unlike last year, when the CFSCC wanted to meet to discuss the Inspector General's report, there was no argument about whether the CFSCC should meet -- this time Donna Dean from the NIH actually proposed that the CFSCC plan to meet. The GAO auditors attended both the SOS and CFSCC meetings. At the CFSCC meeting the GAO auditor stated that they are investigating CDC's and NIH's CFS research activities, how they've spent their CFS money, the value of the CFS Coordinating Committee, and how the agencies have fulfilled Congressional directives.

  • The CFSCC will have a new executive secretary in the NIH's Office of the Director. Janice Ramsden, executive assistant to Acting NIH Director Ruth Kirschstein, will take over committee management functions from Dr. David Morens, who took over this role last year.

    [This report taken from the CFIDS Association of America C-ACT message of February 10, 2000, written by Vicki C. Walker.]

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