Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Pharmacologic and non-pharmacologic treatment advances

Session 1

The first paper was presented by Greta Moorkens (Antwerp, Belgium) and was focused on their studies using combined Cognitive Behavioral Therapy (CBT) and Graded Exercise. 180 CFS patients were studied and a number of onset triggers were identified, together with co-morbidity factors such as depression, busy lifestyle and violence. Patients and staff reported some personal benefits, but statistical analysis did not show any significant improvement with combined CBT and graded exercise, and this negative outline warrants further research. Recommendations were that General Practitioners (GP) needed help with suitable interventions via specialist expert advice.

Elke van Hoof (Brussels, Belgium) had looked at the influence of EMDR (eye movement desensitization and processing) and biofeedback on the hypervigilance in CFS. EMDR reduces amygdale reactivation. Patients were given 4 sessions of EMDR and followed up 4 weeks later. There was no significant differences in heart rate variability, but a positive trend was evident. All patients however improved in physical functioning significantly in areas of vitality, fatigue and concentration. They reported feeling more insight, more control and were enthusiastic about this approach. There is need to look at the protocol further and also deal thoroughly with other life stresses to get the maximum benefit.

Nicole Porter (Chicago, USA) reviewed some alternative medical interventions in the management of ME/CFS and fibromyalgia. She found that several types have potential for future clinical research. A limited number of studies have been done with often suspect methodological quality. Few studies have been done looking at laboratory outcomes of immune function, and there have been inconsistencies of assessment instruments. There is a lack of randomized trials and a lack of reporting of negative results. The strongest evidence for treatments of useful value were for acupuncture and meditation. There is great research potential for looking at supplements such as carnitine, magnesium and S-adenosylmethionine. Qigong may also be helpful, but studies have lacked controls.

Interferon and cytokine levels in the phase III trial of Poly I: Poly C12U (ampligen) was presented by David Strayer (Philadephia, USA). Pre-treatment and intra-patient changes from baseline were compared to see if the treatment had a significant effect on serum levels. Patients had improved significantly in treadmill tests and decreased use of other medications with this treatment, but there was no significant modulation of interferons or cytokines. No safety concerns were raised and the treatment was well tolerated. The decrease in use of concomitant medications was an important point, as several of the medications used regularly in CFS do cause prolongation of the QT interval, with possible risk of death. Overall death rates in CFS patients due to heart failure, suicide and cancer were reduced.

The patients' own experience of living with post-infectious fatigue syndrome (PIFS) following a GI infection caused by Giardia lamblia in 2004—Eva Stormorken—(Vaaler, Norway)—Preliminary findings from a qualitative interview study suggest that all the participants were healthy pre-giardiasis and were either working or studying on a full time basis. Four years later the mean functional level was still below 50% compared with pre-illness functional level, and none were able to either study or work on a full time basis. Findings also suggest that PIFS affects all aspects of life, including disrupted partnership and identity, and loss of friends, leisure activities, as well as work or education. In addition, most of the interviewees reported difficult encounters with health personnel who lacked understanding. Both physical and cognitive complaints varied in number and severity.

Cognitive Behavioral Therapy was looked at from a patient perspective by Elke van Hoof (Brussels, Belgium). 96% of the 100 patients studied were motivated when starting CBT. 25% were using parallel medical treatments. Only 2% of those studied reported total recovery, and 30% mentioned some improvement. 30% reported no change and 38% were worsened. Only 25% were able to complete the program, due to the physical component. Results of this study do not confirm effectiveness of CBT for ME/CFS, and large scale application is not supported.

CBT was reframed by Michael Antoni (Miami, USA), and he hypothesized that chronic stress influencing the HPA-axis may influence the severity of CFS via changes in the pro-inflammatory cytokines. A cognitive behavioral stress management program (CBSM) was devised using a telephonically designed program (T-CBSM), after earlier success with group programs. Participants received 12 weekly sessions via a phone link. Muscle relaxation, imagery, autogenic training, meditation and breathing exercises were included. Controls received a series of health education modules also by phone link. Pain, cognition and sleep symptoms all improved in the T-CBSM group and reduction in Il-6 equated with symptom reduction.

Patricia Fennell (Albany, USA) addressed the role of trauma experiences causing increased stress, which needs to be considered in chronic health management. Trauma maybe: disease/syndrome related, iatrogenic, cultural, vicarious, pre-morbid or co-morbid. Trauma is not a steady state and effects may wax and wane. In CFS, disability issues can provide added stress/trauma. The Fennell Four-phase model can be an effective method for assessing and treating illness-induced trauma.

The clinical and immuno-modulatory effects of Isoprinosine were discussed in a paper presented by Maria Vera, (Miami, USA). 61 patients fulfilled the criteria for inclusion in this study. Patients were treated with Isoprinosine 500/1000mg (odd/even weeks) 3 times a day from Monday to Friday for 6 months. Clinical and immunological assessments were made pre-treatment and post therapy. There was highly significant improvement in the clinical scores of patients treated with this drug at 6 and 12 month follow up. CD4+CD38 T cells were normalizing at 6 and 12 months, NK-cell activity was improved and EBV titres had a highly significant decrease after 6 months. No patients developed gout (a recognized side effect) but 26% did experience gastro-intestinal symptoms. A larger randomized trial would seem appropriate. The downside is that this is a very expensive drug.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.