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​Research round-up: defining M.E., recovery and more

October 24, 2017

Supporting you to stay informed about M.E. research, we publish regular round-ups from Action for M.E. volunteer and pharmacist Emily Beardall, covering a selection of papers published in peer-reviewed journals.

Please note this is not an exhaustive list – we have selected to highlight the studies that we think are most likely to resonate with the daily lives of those affected by the condition. We will also report separately on further studies of significance, as and when they are published.

You can search online directory PubMed for most studies about M.E. published in peer-reviewed journals.

The following studies were published online between 17 August and 16 October 2017. In each case, we have used the same name for the illness as the researchers publishing the paper.

Defining M.E./CFS

A review in the Journal of Health Psychology explores how using several different criteria has prevented progress in research. As there is no blood test for the illness, different researchers choose to use a variety of different criteria, and by this they are selecting different but overlapping groups of people to take part in studies. This has resulted in inconclusive studies of the underlying biology and trials for treatments, which has been a waste of resources.

Using a variety of different diagnostic criteria has also given wildly differing estimates for the number of people with the illness. One solution suggested is that only patients meeting all of a combination of internationally agreed diagnostic criteria should be included in studies. The authors stress that although research should focus on better definition of the disease, sub-groups, prevention and treatments, in the meantime clinics should still be open to people with a broader range of conditions so that their healthcare needs can be met.

Patient surveys after using CBT, GET and pacing

Another study in the Journal of Health Psychology analysed several patient surveys with a total of more than 20,000 responses on the effect of cognitive behavioural therapy (CBT) and graded-exercise therapy (GET) versus pacing on symptoms and illness severity. CBT was found to only be of benefit to a small number of patients, GET brings about large negative responses, while pacing is the most favoured treatment with the lowest negative response rate and highest reported benefit.

The authors acknowledge that patient surveys are open to a range of biases but suggest that pacing should be investigated as an alternative treatment approach.

Brain activity in adolescents with CFS

A study in PLOS ONE compared brain activity scans in 18 teenagers with CFS and 18 without the illness. Those with CFS showed lower levels of activity in an area of the brain called the right dorsal anterior insula, which is responsible for interpreting sensations connected with cognitive performance (thinking tasks), pain tolerance, and physical activity. The authors suggest these scans could be used to assess whether treatment has been successful for these symptoms of CFS.

Recovery in M.E. and CFS

Previous studies have looked at patients’ views on what recovery means but a study of physicians’ views on this has now been published in the journal Disability and Rehabilitation.

Ten physicians who the authors refer to as “experts in the M.E. and CFS field,” all having over 15 years’ experience in leading clinics and conducting research, were interviewed and the majority defined recovery as complete symptom remission with return to pre-illness functioning. They viewed “significant improvement” (or “partial recovery”) as a substantial reduction in symptoms, with patients being able to carry out daily life but still needing to manage the illness.

These definitions matched patient views from the previous studies. The authors make recommendations for measuring recovery for research and clinical practice in terms of symptoms, functioning, and quality of life, all in comparison to patients’ pre-illness functioning.