Chronic Fatigue Syndrome Electronic Newsletter : No. 89 October 28, 1999 Washington DC
Brussels, 9-12 September, 1999
[Dr. Vallings is a general practitioner from Bucklands Beach, Auckland, New Zealand. Her practice is mostly CFS patients and she has seen about 1,500 patients with the illness. This is her report on the Brussels CFS World Congress held on Sept. 9-12 1999.]
[Please remember, regardless of what you may read in these reports, to be sure to consult your licensed health care practitioner about your own health care.]
Reprinted with Permission of Dr. Vallings.
S. Bastien (California) tested for motor abnormalities associated with neuropsychologically compromised CFS patients. She used an extensive neuropsychological battery, and found most motor tests were impaired bilaterally. On the majority of motor indicators, the dominant hand performance was worse than the non-dominant. Male results were slightly different to the females.
The results support the patient complaints of clumsiness, dropping things, weakness and slowed motor co-ordination. Fluctuations in fatigue were described as a result of a French fatigue questionnaire by J.Cabane (Paris). Among the 10 patients, none had permanent fatigue and all had more than one period of fatigue per 24 hours. Various rhythms of fatigue were noted such as monthly, weekly and daily.
Memory impairment was examined by John de Luca (New Jersey) to see whether there is deficient learning of information in CFS as opposed to deficit in retrieval from long-term storage. A well controlled study was described. The results implied that the primary problem in CFS results from deficient acquisition as the patients required significantly more trials to learn a word list than did healthy controls, but there was also some deficient retrieval from longterm storage.
J.Hardt (Mainz, Germany) reported on the work undertaken in 3 countries to compare the quality of life of CFS patients. Remarkable similarity in self-rated functional status suggests homogeneity in CFS patients in USA, Germany and UK.
Byron Hyde (Canada) reported on 4 patients who fell ill with CFS and 4 who fell ill with MS immediately after recombinant Hepatitis B immunisation. The onset in the 8 patients was identical, but the CFS group were distinguishable, as SPECTscan changes were evident with normal MRIs, while demyelinating lesions were evident in the MS patients. The question was raised as to whether the effects after immunisation were coincidental or causal. As a result of similar worries in France this type of vaccine for children has been withdrawn. However it was pointed out that we should not forget the enormous and important benefits in preventative immunisation programmes.
Altered perception of muscle force in patients with CFS was discussed by W.Nix (Germany). CFS patients perceived that it was more difficult to generate a given force output than normals, and although the recovery phase was slower in the CFS patients, they could in fact perform as well as the controls. Its seems therefore that the fatigue could be perceptual and the possibility was raised that mental fatigue sets in earlier than the physical fatigue. A significant degree of functional impairment was demonstrated in CFS patients surveyed by N.Posner and his team in Queensland. They used the SF36 and found particularly that these patients had significant physical role limitation. 8 dimensions were assessed and the means for each were markedly lower than the population norms. The least differences were in the mental health and emotional role limitation dimensions. Results were dissimilar from most other disease profiles, particularly depression, and indicate a very significant degree of functional impairment. Support needs should thus be recognised.
K. Rowe (Melbourne) looked at whether the symptom complex of adult CFS occurs in adolescents. She studied 189 young people with defined onset of fatigue with a symptom complex lasting at least 6 months. 85% of patients had an illness following an acute viral illness. Factor analysis was used with the data from the clinical group. Symptoms reported were consistent across all subjects, and while the symptoms in CFS were similar to adults, prolonged fatigue after exercise, headache, concentration difficulties, disturbed sleep, abdominal pain and myalgia were particularly evident. Somatization disorder was not a likely alternative because of low response frequencies of such symptoms.
Two papers on exercise capacity in CFS were then presented. P.deBecker (Brussels) et al found that CFS patients were limited in their capacity to perform physical activities Females were on average more impaired than males.
Exercise parameters were generally down with a mean working capacity of approximately 55% of normal. C. Sargent (Adelaide, SA) found that CFS patients were not deconditioned and a graded exercise training programme would seem unwarranted in treatment. These patients had normal exercise capacity with abnormal lactic acid accumulation demonstrated from the beginning of the exercise.
Treatment of rickettsial and chlamydial infections with macrolides and/or cyclines was discussed by P.Bottero (Paris) Symptoms may be accentuated initially due to release of bacterial toxins, but this can be combatted by the use of anti-inflammatory drugs. The drugs are used cyclically and may be needed for one to two years to obtain positive outcome. Overall results were not discussed.
Treatment with the drug Isoprinosine (an immune modulator with anti-viral properties) was outlined by B.Hyde (Canada), who described this drug as having been available for 30 years without encountering any serious side effects. Patients studied were widely and thoroughly investigated, and a group of 16 CFS patients with abnormal SPECT scans was treated using placebo control over a 7 month period. 7 patients improved on the drug, 7 remained unchanged and 2 deteriorated when on placebo, with improvement once the drug was reinstated. Improvements in general health and energy were modest but significant. All those who improved were happy to continue. Thinking and memory improved, ataxia decreased, headaches decreased, there was less clumsiness and better motor function. In particular, ability to attend social functions increased. Only one patient experienced side effects, which were bad headaches.
N. Klimas (Miami) discussed further her work showing alteration of type1/type2 cytokine patterns following adoptive immunotherapy using expanded lymph node cells. 13 patients with strict inclusion criteria were studied. Lymph nodes were removed and cells were then cultured for 10-12 days and reinfused into the donor who was monitored for safety and possible clinical benefit. No adverse events were recorded. 2 patients had unsuitable fibrotic lymph nodes, so were not included. For the remaining 11 who underwent successful expansion and reinfusion, there were favourable clinical and immunological results. It is hoped that further trials will follow. Three studies regarding the use of the drug Ampligen were then reported. Ampligen is a biological response modifier with antiviral and immunomodulatory effects.
D.Strayer (USA) had compared twice or thrice weekly infusions in order to optimize the dosing schedule. 111 patients were studied. Activity and safety of the 2 dosing schedules were compared and it was found that thrice weekly dosing offers no advantage over a twice weekly schedule. There were slightly more adverse events in the thrice weekly group, mainly myalgia and flu-like symptoms.
A pharmaco-economic analysis intervention in CFS was presented by W.Carter (USA) looking at the savings on concommitant medications and hospitalisation in the treated and untreated groups. Although the cost of the drug is extremely high, considerable savings were shown to be made in these areas, which it seems could have some thrust in convincing government agencies of the potential of this drug, particularly more so if patients could eventually return to the workforce.
Finally, K de Meirleir presented his work on the Ampligen study in Belgium. 44 severely affected patients under 60 had been given the drug for 24 weeks and compared to 16 untreated controls. Infusions were given twice weekly starting with 200mg and increasing to 400mg. There was significant improvement in bicycle-exercise testing, increased Karnofsky scores, reduction in cognitive impairment, alleviation of many of the CFS symptoms and improved general health perception, significant improvement in day to day function and no serious adverse events.
A wide variety of posters were displayed and the following represents a brief overview of some of the important findings.
Epidemiology
P. de Becker (Brussels) looked at mode of disease onset in CFS. 74% patients had acute onset with progressive disease in 26%. Infectious agents seem to play an important role in the onset of CFS with other factors such as immune dysregulation involved in the perpetuation of the illness.
He also did a 6 month follow up in CFS patients. He found that health stayed unchanged or deteriorated measured by several parameters. Especially, physical capacity seemed to get worse over time. Only a small number of patients were followed over this relatively short period of time. 1248 patients were studied in a further poster by de Becker, and in almost all patients all symptoms of the Holmes criteria occurred. Other symptoms noted were: dyspnoea, lightheadedness, gastro-intestinal complaints, cold extremities, decreased libido and disequalibrium. They found the Fukuda definition less stringent and therefore less suitable for scientific homogeneity.
E. Fitzgibbon (Galway, Ireland) had used the SF36 in a postal survey of 123 CFS patients. There was 77% response rate. With a mean duration of illness of 5 years, 66% were improving, 29% were static and the remainder were worse. 26% described themselves as almost back to normal with 60% back to fulltime work or study. The females had worse general health and reported more symptoms. Quality of life was lower in all domains measured by the SF36 than norms, and the overall results were unique compared to data from other disease groups. In the UK the diagnosis of CFS seems better accepted than Multiple Chemical Sensitivity as pointed out by D.Jones. 78 patients had completed questionnaires demonstrating the difficulties in diagnosis and the complexity of this condition. Many possible causes were cited. She had also followed up 45 patients who attributed their CFS-like illness to use of cotrimoxazole. Midlife and elderly women's vulnerability to CFS was discussed by M.van Moffaert (Ghent, Belgium). It seems many underlying health disorders and sociological factors increase the vulnerability to both CFS and multisomatoform disorders.
Prevalence of bronchial hyper-responsiveness in CFS was observed by K.Bervoets (Brussels). A high incidence was observed irrespective of smoking habits. This finding cannot be explained by the expiratory muscle effort involved in the histamine provocation procedure, as there was no significant difference between baseline spirometry and expiratory muscle strength between CFS patients and controls. E.Brouns furthered this work by looking to see if there was correlation between cellular immunity and bronchial hyper-reactivity in CFS. These patients were significantly found to have an increased number of activated T-cells and a decreased number of cytotoxic T-cells. RnaseL testing was done in 136 German patients by L.Habets. RnaseL dysfunction was found in most patients with a correlation between the RnaseL/LMW RnaseL ratio and disease symptoms.
M.Reynders (Brussels) found that the large amount of LMW RnaseL correlates with higher levels of IFN gamma, which has antiviral properties. Normal NK cell numbers with high LMW/HMW ratio correlate with high IL-12 levels in CFS patients compared with controls. IL-12 has been shown to be a potent inducer of IFN gamma secretion by both resting and activated T and NK cells in humans.
D. Racciati (Italy) et al observed an alteration in the antioxidative enzyme activities of skeletal muscle, and alterations of fatty acid composition and fluidity of membrane in muscles in CFS and FM patients. No similar abnormalities were found in controls. The oxidative muscle damage could represent the consequence of an impaired oxidative/antioxidative system and could possible correlate with the increased muscle fatiguability in CFS.
4 case reports by A.D.Hock (Germany) brought up the possibility that Vitamin D and parathormone disturbance should not be overlooked as a possible cause of chronic fatigue. The symptoms are very similar and this is a treatable disorder. S. Meghan (Boston) as leader of a group of female health care workers with CFS stressed the importance of considering that as this illness seemed to be "predominantly female" we should not overlook the impact of the endocrine system as a likely factor in potentiating CFS.
Symptom patterns in adolescents with CFS were again addressed by K. Rowe (Melbourne). 189 young people were studied. 3 subgroups were identified according to severity. The more severe group had greater fatigue and pain, the moderately severe group having more neurocognitive symptoms and the least severe having more headaches, nausea and abdominal pain. Investigation of these subgroups may assist with management.
The pregnancy experiences of women with CFS were explored by R.Vallings (Auckland, NZ). Most women found the experiences positive, but the importance of family and partner support was emphasised together with an understanding of CFS by the obstetric personnel involved.
Data were collected by P. de Becker and de Meirleir (Brussels) on 1248 patients attending a clinic complaining of chronic fatigue. The patients were subgrouped after thorough review according to whether they had CFS or chronic fatigue from other disease causes. Frequency and severity of symptoms were more marked in the CFS group.
The physical capacity of the CFS patients was lower and they seemed to be more debilitated. In another paper they also found that 4.5% of a large cohort of patients reported that their illness came on following surgery with an accompanying transfusion. None had developed Hepatitis C or other possible transfusion-transmitted infection. The findings do point to a possible transmissable cause in this subset of CFS patients. They therefore advise CFS patients not to offer to be blood donors. Blood transfusions also should be given when strictly necessary. While looking at possible opportunistic infections, they concluded that mycoplasmas might be partially responsible for some of the signs and symptoms in CFS. They also seem to be implicated in the T-cell activation observed in these patients.
CFS patients suffer significantly from psychomotor dysfunction, which may contribute to the global disability in the syndrome. (L. Lambrecht, Ghent). Rehabilitation methods including biofeedback and progressive aerobic training and restoring psychomotor abilities may constitute an important part of management. Low prevalence of autonomic dysfunction was found in this group of patients. The same team had evaluated neuropsychological impairment using numerous different tests and found that the Purdue pegboard turned out to be the most affected test. Visual memory span was affected and 20% of the patients were depressed according to the Beck depression inventory. When they reviewed SPECTscans in CFS patients, 189 aberrations were found in 65 patients.
O. Zachrisson (Sweden) found a high prevalence of irritable bowel syndrome in CFS and FM patients (61%) and a further 19% had other GI symptoms. A common pathogenic mechanism such as disturbed microflora in the gut was suggested.
L. Barker (Essex UK) described an 8 week group programme for CFS patients was followed up by questionnaire/audit, and results demonstrated that 71% patients improved, with a number returning to work or college. It is hoped therefore to develop outpatient services to provide a comprehensive management approach to the illness.
P. Bottero (Paris) demonstrated the immunology of Rickettsial diseases (small intracellular gram-negative bacteria). It seems that rickettsiae penetrate and persist in the macrophages and diminish their function. Accompanying immunological changes also occur.
4 papers on Gulf War Illness (GWI) were presented as part of the opening symposium.
Peckerman and Natelson (Orange USA) presented figures to familiarise us with the situation in the USA. 16.8% of returning veterans surveyed had medical problems. The rate of Chronic Fatigue in this group was 5.2% compared to 1.2% of veterans in non-active service. Of those diagnosed as suffering from GWI 50% fitted the criteria for a diagnosis of CFS. It was hypothesised that those suffering from GWI have poor control of cardiovascular stress. Cardiovascular regulation was studied using various approaches. BP tended to fall during speech and mental arithmetic tests with no difference in pressor tests.
During the speech test the peripheral resistance did not budge as it should. 3 possible issues were raised: Is this: (1) related to the cause of fatigue, (2) a marker of illness or (3) a premorbid condition?
The greatest physiological consequences, impacting central and peripheral control systems, occurred in veterans who sustained exposure to both chemical and severe psychological war stresses.
Using factor analysis, Paul Levene (Washington) also concluded that the identification of a cluster of neurologic symptoms in a large sample (7000) of deployed Gulf War vets that could not be found in non-deployed vets supports the possibility that environmental factors could be responsible for some of the complaints of Gulf War veterans.
M. Hooper (UK) described the Gulf War as the most toxic war in all military history. Up to 17 vaccines were given, many disinfectants were used (e.g. in insect control), many chemical warfare agents were in the area, "uranium" weapons were used creating toxic dust, biological weaponry was in the area (e.g. brucella, smallpox, viruses) and many other chemical agents (smoke, oilfires) were prevalent. Birth defects have now been found to be a major factor in Iraqi veterans' families. Risks of leukaemia, other cancers, neurotoxic effects and possible effects on sperm are also becoming evident. G. Nicolson pointed out that there is as yet no case definition for GWI, but the signs and symptoms loosely fit the CFS definition.
Using Forensic PCR Hybridization it was found that 45% GWI patients showed evidence of mycoplasmal infections in the leucocytes but not in the plasma or serum. When comparing CFS patients, 70% of them were found positive for mycoplasma. A variety of mycoplasma species were found. These infections could be causative, cofactors or opportunistic. These infections maybe a major source of morbidity in these related illnesses. There is some evidence of possible transmission to family members. Possible other transmittable bacterial and viral infections maybe involved.
Treatment with appropriate antibiotics and nutritional support can result in improvement in these chronic conditions, though not in every case. It is possible that GWI is to a large degree due to multiple exposure to chemical, radiological and biological agents that can cause immune depression, multiple infections, and multifactorial illnesses, which may be treatable.
[Thanks to Dr. Rosamund Vallings for this report. Please remember, regardless of what you may read in these reports, be sure to consult your licensed health care practitioner about your own health care.]
CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. Suggestions and contributions of news may be sent to Roger Burns by Internet e-mail to CFS-NEWS@MAELSTROM.STJOHNS.EDU or leave a voicemail message by telephone at 1-202-966-8738, or send to postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA. Copyright (c) 2001 by Roger Burns.
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