Second World Conference on CFS and Related Disorders
Brussels, Belgium, September 9-12, 1991, Part 2
Rosamund Vallings, MB BS, Auckland, New Zealand. CFS Electronic Newsletter,
88, October 1999
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 SPECTscans 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.
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.
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.
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.
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.
GULF WAR SYNDROME
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 maybe 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.]
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