The CFIDS medical conference held at Ft. Lauderdale, Florida, from October 7 through 10, featured the presentation of 37 research papers, 14 workshops and moderated discussions, and nine clinical discussion sessions. Although no single earth-shattering breakthrough was announced at the conference, many participants noted the broad variety and high quality of the research presented. This article will summarize several research papers, and presentations about treatments.
RESEARCH ON THE CAUSE OF CFIDS
Prof. Mark Demitrack discussed recent studies by himself and others about dysfunction of the hypothalamic-pituitary-adrenal (HPA) axis, an important concept in current theories about the origin of CFIDS. Demitrack explained how hormones can play a role in producing fatiguing illnesses, including CFIDS. Demitrack speculated that the observed lower cortisol levels in CFIDS patients were more likely a result of the illness rather than a cause. He cautioned that simple cortisol replacement is not advisable as a potential treatment and would likely make a patient’s condition worse. Demitrack stated that the next step in this field of research should try to prove what specific role these anomalies play in the CFIDS disease process.
In another noted paper, pharmacologist David Saphier interferon-alpha in the brains of rats and found that it inhibits HPA secretions. Prof. Saphier suggests that increased secretions of interferon alpha may be responsible for the nervous system and hormonal features seen in CFIDS.
Several papers shed light on the possibility that there may be a genetic component to CFIDS. Dr. Paul Levine of NIH found a correlation in low NK cell activity among family members with CFS. Dr. Richard Lanham studied the family history of CFIDS patients and found more autoimmune illness (assumed by many to be genetically linked) than families of controls. Dr. Nancy Klimas and Anthony Komaroff commented that they noticed a higher incidence of endometriosis in their CFIDS patients—another possible autoimmune/genetic link.
Dr. Michael Holmes of New Zealand described indications of an unknown particle uniquely isolated from CFIDS patients’ blood which looks like a virus, but which needs further study. Dr. Roberto Patraca said there was a growing consensus that many of the viruses observed in various studies might not necessarily be implicated as causing CFIDS, but nonetheless play other important roles in this disease’s process. Dr. Dharam Ablashi commented that research on cytokines will continue to be very important in the future.
Problems in muscle energy production were explored in a paper by Dr. Hirohiko Kuratsune of Japan, who found lower acylcarnitine in CFS patients. Similar results were described in a paper by Dr. Audrius Plioplys.
No treatments that were completely new were presented at the conference. However, some additional light was shed on known treatments, and some methods of therapy were given more attention than they had received at other recent conferences.
At a “Doctor to Doctor” discussion session, Dr. Klimas took an informal poll to see what treatments were commonly used by physicians. At a later session, Dr. Jonathan Rest presented a formal survey of doctors on the same question, and the results were similar.
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In both surveys, common prescriptions were: selective serotonin re-uptake inhibitors (SSRIs, including Zoloft, Paxil and Prozac) used for fatigue, cognitive dysfunction and depression; tricyclic antidepressants (TCAs, such as doxepin, amitriptyline) for sleep disorder and muscle and joint pain; non-steroidal anti-inflammatory drugs (NSAIDs, such as ibuprofen and naproxen) for headache and muscle and joint pain.
Additional light was shed on known treatments, and some methods of therapy were given more attention than they had received at other conferences.
Lifestyle changes, behavior modification and graduated exercise were also recommended. Dr. Klimas emphasized that these programs were underrated and yet quite important among available CFIDS treatments. Dr. Mark Loveless spoke in a similar vein about management and planned activities.
Other treatments often prescribed were Klonopin, IMgG, nutritional supplements (particularly antioxidants, B-vitamins in general and B-12 specifically), herbs, and acupuncture. Less often prescribed were chiropractic therapy, IVgG, kutapressin, antivirals, interferon, and transfer factor. A panel of clinical experts answered questions on primary medical care for CFIDS patients. Dr. David Bell described the tragedy of children with CFIDS who may develop “identity confusion” while growing up, being unsure about the boundary between their personal abilities and the limits imposed by the illness. Dr. Paul Cheney was asked about the general effectiveness of known CFIDS treatments and said those who were moderately ill often responded better than those who were more seriously ill. He commented on the general therapeutic effects of hydrotherapy. For central nervous system problems, Cheney recommended klonopin, calcium channel blockers, and magnesium. On the other hand, Dr. Nancy Klimas recommended against taking multiple prescriptions for nervous system complaints, particularly the benzodiazepines such as klonopin. Dr. James Jones commented that he often found in his region (Colorado) that many who reported CFIDS-like symptoms responded very well to sinusitis treatments (saline nasal wash). When the full panel was asked about the advisability of flu shots for CFIDS patients, three were in favor and two recommended against.
During the research session, Dr. Katherine Rowe presented an Australian study showing the benefits of intravenous gammaglobin (IVgG) treatments given to adolescents. Rowe commented that similar results might not be seen with adults because the health of young people is more resilient, which might increase the responsiveness. In other comments later, Dr. Paul Cheney said that in his experience some patients have been helped by IVgG, although these treatments are expensive and are usually not reimbursable by insurance. Cheney also said that intramuscular gammaglobulin (IMgG) is generally less useful, except for patients with recurrent infections of the upper respiratory system.
COURSE OF THE ILLNESS
Dr. Lea Steele reported on how CFIDS generally progresses, based on preliminary results of a CDC study of 478 patients over time. The survey was imperfect because some patients who recovered did not continue in the study, therefore making some of the figures appear more pessimistic than they should be. The study showed the illness to be highly variable, particularly in the first five years. Two general windows of recovery were noted (only in terms of higher probability): from 2 to 3 years after onset; and from 4.5 to 6 years after onset. Some patients in the study recovered after 10 years.
Among patients with an infectious onset, Steele said, those who were ill less than four years reported a recovery rate of 36 percent and others recovered at a rate of 10 percent. For patients without infectious onset, those who were ill less than four years had a recovery rate of 17 percent and others recovered at a rate of 6 percent. Steele cautioned that these general figures cannot be used to indicate the chances of recovery for any individual patient. Results based on final data are being prepared for publication.
Abstracts of the conferences can be obtained by sending a check for $15 ($12 for AACFS members) made payable to AACFS, in care of Ms. Leslie Boyer, 7 Van Buren St. Albany, NY 12206. Video and audio tapes can be obtained from Grissom Production Services, Inc., 904 South 22nd St., Arlington, VA 22202, or telephone (800) 484-7447.
Roger Burns publishes the CFS-NEWS Electronic Newsletter, which can be obtained by sending Internet e-mail to: CFS-NET@LIST.NIH.GOV