New Zealand Research on ME/CFS
Why does the research matter?
The PACE Trial was a highly influential trial which suggested that ME/CFS could be treated through Graded Exercise Therapy (GET) alongside CBT. CBT was used to treat patients for an assumed aversion to exercise. The PACE Trial was conducted by a group of researchers who felt ME/CFS could be treated as a psychosomatic disorder (a mental illness) rather than as a disease.
The reanalysis conducted by Wilshire, Kindlon, Courtney, Matthees, Tuller, Geraghty and Levin confirmed the concerns expressed by many clinicians, researchers and people with ME regarding notable flaws in the PACE Trial’s methodology. This analysis, Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT, concludes that the Trial data does not support the idea that GET/CBT is an effective treatment for ME. The reanalysis also discusses the likelihood Graded Exercise Therapy (GET) is harmful for large numbers of people with ME.
The research conducted by Sweetman, Ryan, Edgar, MacKay, Vallings and Tate found numerous difference in gene transcripts between ME/CFS research participants and healthy controls. Many of the altered gene transcripts map to common symptoms reported by people with ME/CFS.
“Functional network analysis of the altered gene transcripts (P < 0.01) detected interactions between the products related to inflammation, circadian clock function, metabolic dysregulation, cellular stress responses and mitochondrial function.”
The research adds to our knowledge of the gene transcription component to ME/CFS.
Why Does the Research Matter?
Hodges, Nielsen and Baken compared the Physiological Responses to Exercise of ME/CFS and MS Patients to that of age-matched, healthy controls during an exercise test. They then repeated the test 24 hours later. The test uses objective measures. This study was a small pilot study. Healthy controls and MS patients improved their workload on the second day. In contrast, the workload decreased for ME/CFS patients on the second day. This is helpful as the cardinal feature of ME/CFS is Post-Exertion Malaise (PEM). Twenty-four hour repeat exercise tests can therefore objectively measure physiological changes in the bodies of people with ME at the point they are experiencing PEM, the onset of which is often delayed 24 hours after exertion. The authors noted the ME/CFS patients took 2 to 4 weeks to recover from the repeat test. The research:
Replicated other studies objectively measuring physiological changes that occur during PEM.
Reiterates the likely harm that exercise might cause to people with ME.
Indicated ME/CFS patients exhibit a different response to 24-hour repeat exercise tests compared to MS patients therefore offering a method of differentiating two conditions that can be misdiagnosed.
Why Does the Research Matter?
Dr Baken, Harvey, Bimler and Ross discover that people with ME/CFS perceive a higher level of negative attitudes and responses directed at them due to their illness when compared to similar surveys conducted with people with other neurological disorders. The self-report survey found an association between the stigma reported by research participants and health and functional ability. The research suggests that negative attitudes are deeply felt by people with ME/CFS and they have far-reaching implications on their ability to participate in social roles and activities. People with ME/CFS participating in the survey also reported lower levels of satisfaction in their participation in these roles and activities. The survey reaffirms a body of research that has consistently found low quality of life with people with ME/CFS compared with other serious health conditions.
Current Research Provides Insight into the Biological Basis and Diagnostic Potential for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Eiren Sweetman, Alex Noble, Christina Edgar, Angus Mackay, Amber Helliwell, Rosamund Vallings, Margaret Ryan and Warren Tate
The authors provide a summary of notable research that is shedding more light on the biological basis for ME/CFS. They overview the progress toward the development of a diagnostic test.