MEDICAL UPDATE Winter 1999

Conference Report

Here are some of the more interesting views and findings which were published in the Proceedings of the Fourth International Conference of the American Association for Chronic Fatigue Syndrome, held in September 1998 in Cambridge, Massachusetts, USA. The source is the Journal of Chronic Fatigue Syndrome, 1999, 5, 3/4.

Jason et at (ibid., 3-33) discuss the definition of CFS and note the confusion resulting from the use of broad criteria. Walker (ibid., 91-93) describes the positive outcomes among patients seen at the University of Michigan, where three-quarters reported feeling better about 14 months after their initial visit. The more severely affected did not differ from the less severely affected in terms of age, activity, exercise and perception of causes.

Rowe (ibid., 97-107) claims that most patients who completed a trial of gammaglobulin had not deteriorated five years later. Sixty per cent of the participants considered they were well at the last follow-up (45% scored 10/10), although a significant number were still disabled. Cheney and Keever (ibid., 115-116) report that of the 14 patients with CFS who were treated with a growth hormone secretagogue (to raise IGF-1 levels), 57% noted a beneficial response.

Friedberg (ibid. 149-159) analyses the reasons why CBT and graded exercise programmes appear to be more effective in British trials than American or Australian ones. He believes that there are subgroups of CFS patients, and that British researchers have included individuals with chronic fatigue caused by primary psychiatric disorders or psychosocial factors. Indeed, he cites studies suggesting that British research samples show substantial similarities to depression, somatization or phobia patients while the population studied in the States and elsewhere more closely resemble "fatiguing neurological illnesses".

Following a review of the literature, Friedberg concludes that graded exercise and CBT may be most appropriate for low functioning patients with a phobic-like fear of symptom exacerbation. Conversely, high functioning individuals, or low-functioning ones without a disproportionate fear of symptom flare-ups, may show a much more limited response to this type of intervention. He also mentions the follow-up report on the first ever trial of CBT (Sharpe et al) which shows that the improvements "begun to decline 17 months after treatment termination... suggesting that these patients are not recovered". Friedberg himself recommends a coping skills approach using techniques such as stress management, pleasant mood induction and activity pacing.

A study by Bazelmans et al (ibid., 175-6) indicates that a woman’s double role does not make her more prone to CFS while a survey of Dutch GPs by Prins et al (ibid., 177-8) revealed that their empathy and understanding were largely determined by the number of patients and the years in practice.

Research by Johnson et at (ibid., 185-186) compared the personality variables of people with CFS and MS. They found a number of similarities, though both groups differed from healthy controls. In their view, the abnormalities were a likely result of "the demoralizing effects of coping with a chronic, disabling illness marked by uncertainty. CFS subjects have the additional burden of an illness that lacks medical legitimacy".

In the microbiology section, Levine (ibid., 199-206) presents data suggesting that Bornavirus may play a role in a small subgroup of CFS patients. A study by Suhadolnik et al (ibid., 223-242, and 243-244) found a significant upregulation in CFS of the 2-5A synthetase/RNase L pathway. (This is part of the antiviral defence mechanism.) Moreover, there was a significant negative correlation between these findings and disability, as measured by the Karnofsky Performance Score. Other findings also indicate a relationship between the upregulation of the 2-5 A synthetase/RNase L pathway and a lower state of general health, and not just in the most severely affected patients.

Ablashi et al (ibid., 244-245) implicate human herpesvirus-6 (HHV-6) reactivation as a cause of the illness, while Knox et al (ibid., 245-247) refer to a "persistent infection" with HHV-6. They believe that the patient should be assessed using multiple blood samples over a period of weeks or months to obtain a more accurate picture. Klapow (ibid., 247-8) found evidence of a nematode parasite (C. pulmoni) in a subset of patients, while Peckerman et al (ibid., 252-253) suggest that the more severely affected may have a "low flow circulatory state". Finally, Paul and Wood (ibid., 253-4) report that compared to healthy controls, patients with CFS have poorer balance following exercise, at least when tested with their eyes closed.

Original research

Hill, Natelson et al studied 23 patients with moderate to severe CFS (CDC criteria ‘88) who were offered no more than standard medical care. Over the 4 years of the study, 13 patients (57%) remained severely ill, 9 improved (29%) though they still fulfilled the less demanding 1994 case definition, and 1 (4%) recovered. Illness duration, mode of onset, psychiatric status or depressed mood at intake, and chemical sensitivity did not predict illness outcome. Mood improved for those patients whose illness lessened. (Archives of Physical Medicine and Rehabilitation 1999, 80, 9, 1090-4). Do note that these disappointing results only relate to the more severely affected and that they may not have been offered sound advice, let alone the latest treatments.

In the past, several studies of dubious quality have suggested that people with CFS have perfectionist personalities. Now a team of experienced British clinicians led by Dr. Blenkiron have replicated this work on 40 patients (CDC criteria ‘94), using sound measures. To their obvious surprise, the perfectionism scores of the patients were actually lower than those of the healthy controls. (Journal of Nervous and Mental Disease, 1999, 187, 9, 566-571). Another myth bites the dust!

Finally, Jason et al have just reported the results of a large (n=28,673) community-based study on chronic fatigue/CFS. They estimated that .42% of the population had CFS (CDC criteria ‘94) and found more cases among women, minority groups, and persons with lower levels of education and occupational status. "Earlier findings suggesting that CFS is a syndrome primarily affecting white, middle-class patients were not supported by our findings". (Archives of Internal Medicine, 1999, 159, 2129-2137).

In my view, this is probably one of the most reliable estimates to date, because everyone completed a medical examination and the figure was not just based on the data from questionnaires.

 

Copyright EM. Goudsmit 1999. ©
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