AACFS Research Conference

Nearly 100 presentations were held at the biannual American Association of Chronic Fatigue Syndrome's conference held in October. The following summary will present the highlights of the research conference and a few of the lowlights. There were more former than latter, and the presentations, coming from all over the world, was a decidedly encouraging feature of this fourth international conference held in Cambridge, MA. Although the conference was poorly organized, the main lecture hall was much too crowded, the room for poster presentations and other presentations was much too far away, and the slide projector often presented problems of running the presentations late and cutting down the time for questions and answers (Q&A), there were some superior presentations mingled among those that ranged from mediocre to downright disgraceful. 


The oral presentations began with an epidemiology study on the prognostic factors for PWC/MEs that analyzed a very low number to arrive at "experimental evidence," but other studies had more substance. Dr. Leonard Jason's study was a large cross-sectional one that seemed more realistic because data from clinic samples "bring in a biased selection." The findings in this study, close to what the government is finding, showed all economic levels. Dr. M. Reyes, in the Wichita study, said, "CFS is a larger health problem than previously thought." The prevalence is now thought to be 18 per 100,000 is a "probable prevalence," according to Anthony Komaroff, M.D. About one quarter of that number is seen in children under 10, and one half of the number applies to teenagers. It has been found in high numbers in Latinos and Blacks, but lower in Asians. A study by Dr. Natelson's group found there is no symptom improvement in the severely ill subset of CFIDS, and only 4% recovered while 39% of other patients did improve. The most severe patients were rejected from Dr. Natelson's research. While physical therapy helped, exercise did not. Nutritional supplements were just a slight help, and psychiatric help was not predictive of outcome. A study on Gulf War Illness found a substantial percentage fit the CFS 1994 criteria. More GWI veterans had post-traumatic stress disorder (PTSD) and MCS (multiple chemical sensitivity) than CFS (17-27%), although a poster presentation by Albert Donnay found over nine times what the government found in the overlap between MCS and CFS. Famous psychobabbler Peter Manu was asked if his subjects were handed to him by insurance companies or randomly chosen. An embarrassed Manu answered, "I don't know." Dr. Dedra Buchwald then defended the stammering doctor as the audience tittered. 

Clinical Research

Dr. J.A. Bellanti spoke on the still ongoing trial of NADH. This natural substance may be of some help to about a third of the patients. Most presentations in this category were psychobabble at its worst. The Australian group's presentation was particularly biased. The "most prominent features" they found were fatigue, malaise, fever and chills, headache, and myalgia or arthralgia, but no mention of cognitive problems, the hallmark of CFIDS. All the psychobabble presentations lump chronic fatigue and chronic fatigue syndrome into the same category. During the Q & A period, Dr. Lloyd admitted that the prevalence of premorbid depression was very low. One Belgium team reported on using growth hormone therapy (GHT), but patients felt no better. Low GH was first found in fibromyalgia patients by Dr. Robert Bennett. Several U.S. physicians felt using GH was particularly dangerous (it can increase prostate cancer). Dr. Strayer (Hemispherx BioPharma) reported on Ampligen and how the patient's long-term follow-up (long meant just two years in Belgium) had improved Karnofsky profiles. Because he did not use pain as a clinical endpoint, the figures ended up looking better than the patients felt. Cognition was said to improve by 26%. When questions arose about the double hyphen blind studies, he admitted that those receiving a placebo would only get Ampligen for 24 weeks following the trial. Since going off of Ampligen is often a horrendous experience, this is not in the patient's best interests. 

Rudy Perpich Memorial Award

The second Rudy Perpich Memorial Award was presented to Dr. Phillip Lee, former Assistant Secretary of Health. Rudy Perpich was a governor whose child was a victim of CFIDS. Dr. Lee was the former chair of the CFS Coordinating Committee and tried desperately to make a difference, although his efforts were in vain. In his acceptance speech, Dr. Lee urged that the name CFS be changed, and went on to say that it was a "horrific name" for those suffering from the illness as well as for researchers. He received a resounding standing ovation! 


Dr. Harvey Moldofsky reported on disordered circadian sleep cycles that he published on in 1995 (Adv. In Neuroimm, 5:39-56) and the further altered patterns he's found that accompany alpha EEG sleep disorders. He found that the PWC/MEs circadian rhythm reached a lower point faster at night in a low cortisone level much sooner. While healthy subjects had a slight decline in the afternoon, the PWC/MEs "get wiped out in early afternoon and stay at a lower level." The arousal disturbance was found in the circulatory patterns of NK (natural killer) cells, cortisol, and prolactine. The circadian rhythms are controlled by the thalamus in the brain. Dr. Eng Tan said there are different patterns seen in the types of antigens in CFIDS. There are several different types of antigens in the body, but a different pattern is found in PWC/MEs. He said, "It's very clear that these auto-antibodies that have been characterized in other illnesses like lupus (and scleroderma) are not found in PWC/MEs." The proteins that are attached to the nuclear envelope slow the localization of defined autoantigens that are completely different than the overlapping illnesses mentioned above. A significant difference was found in immune complexes that are "characteristic of a subgroup" of PWC/MEs. Dr. Aristo Vojdani traveled to Israel to learn how to do more sophisticated testing that he then applied to CFIDS. His publication, due out before this newsletter, found programmed white cell death (apoptosis) in 26% of PWC/MEs versus only 5% of a control group and "a significant elevation of protein levels in PWC/MEs." He studied a group of PWC/MEs that were exposed to benzene in the water from North Carolina as well as PWC/MEs with HHV6 and concluded that "CFS is a multifactorial disease…induced by viral or other factors." Dr. Wagner (from Dr. Klimas' research team) found the most consistent immune abnormalities were the decreased NK cytotoxic cells and the increased CD8 in both HLA and DR. Many other immune markers are of "mixed findings" so there is a definite relationship between immune symptoms and the immune status of PWC/MEs. The group studied ranged in age from 27 to 80+ years old. This work suggests that the greater the symptoms, the lower T-cell function in CFIDS. 


This collection's prime emphasis was psychobabble. One study found that psychiatric patients who get CFIDS "have a different pre-CFS pattern of brain organization than psychiatric patients who remain physically healthy." Another study found that PWC/MEs have a slower performance speed than others that has nothing to do with anxiety or depression. A Canadian research team found that cognitive performance of both CFS and fibromyalgia patients was very similar and a psychiatric characterization of any of these syndromes has very little support. Yet the authors still felt cognitive behavioral therapy could help. 


The most exciting part of the conference began with the early morning presentations of HHV6. Dr. Ablashi found increased activation of Human Herpesvirus-6 reactivation or persistent-latent infection in CFIDS patients, although none in HHV-7 or -8. He suggested that the virus has a role in the pathogenesis. Dr. Konstance Knox, as our last issue predicted, was the start of the session, if not of the entire conference. She found a huge number of PWC/MEs suffering from active and persistent infection that she feels could account for all the clinical symptoms of the disease! While some were found to have chronic active, some had periodically active HHV6A. She cautioned that, since MS is so similar in the symptoms as well as HHV6A, doctors should be careful to rule it out. "A relatively high rate" of PWC/MEs, she explained, "have abnormal MRI scans showing vasculitis" so MS and CFS "show a convergence" of symptoms and "a number of CFS patients may have significant neurologic presentations." Her large study (400 PWC/MEs) showed that nearly 0% of healthy controls showed any reactivation. Later, Dr. Nancy Klimas said of Dr. Knox's presentation, "My mouth was open! I was so impressed!"

Dr. Robert Suhadolnik explained that, in two years time, he had been very busy building up his earlier work on the abnormal 2-5A/RNase L Antiviral Defense Pathway. He had reported two years ago on just six patients and two controls. "He said, "The pathway is a tightly regulated one that kills viruses that affect patients. They showed that in Israel." The patients that were studied came from Drs. Peterson and Cheney and "were evaluated three times each." The novel low molecular weight (LMR) RNase L (37kDa) was discovered to be present in PWC/MEs. "What this means," he said. "is as the antiviral pathway changes and gets more abnormal, then the patient feels worse." Dr. Lebleu of France, who has also been working on this antiviral pathway using a different method, found 86% of the PWC/MEs tested were abnormal, while Dr. Suhadolnik has found 82%. These numbers are considered extremely high in research. Dr. Suhadolnik has also determined a subset of patients that are "within the realm of CFS" but said to "keep in mind that things will change as we learn more." 


Professor Peter Behan found "a functional disorder of cell membrane" in the ion channel. They begin exercise with a lower capacity that shows "the patients aren't faking it" and do get worse from exercise. In addition to exercise, the other things that can have an effect on the ion channel include alcohol, quinine, and anesthetics. The PWC/MEs "showed irregularities in the handling of potassium," said Behan. These were not related to ischemia. The SPECT scan results were similar to those in syndrome X and could affect such neurochemicals or neurohormones as acetylcholine and serotonin. This new discovery showed that the cells are leaking potassium and a lot of energy required to keep potassium in the cells is being expended by the patient. This may be the reason that the heart muscle is not pumping as much as it should. Dr. Kenny De Meirleir spoke on the RED diagnostic test that was being used to detect the RNase L Dysfunction in PAC/MEs taking Ampligen. This is not the technique used by Dr. Suhadolnik but, instead, is based on the description given by Charachon et al (Biochemistry 29:2550-2556, 1990). Dr. Arnold Peckerman (Dr. Natelson's group) spoke on a disorder of the circulation. 

In moderately ill PWC/MEs, a diminished blood pressure response is seen, but in severe PWC/MEs, a low-flow circulatory state is suggested. Another researcher from Dr. Natelson's group, Dr. Sue Ann Sisto, talked about the relationship between cognitive tests and exercise. "Less change was seen in the systolic blood pressure," said Dr. Sisto, which showed PWC/MEs have a lower cardiovascular level at baseline.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606