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​Cochrane review of GET: our concerns

October 03, 2019

Cochrane Reviews, the gold-standard of systematic healthcare research reviews, has published an update of its review of graded exercise therapy (GET) for M.E./CFS.

This comes under the category of intervention reviews, which “assess the benefits and harms of interventions used in healthcare and health policy.”

However, the review remains based on what is now a very outdated protocol, using a research question and methodology from 2002; and only including eight randomised controlled trials that relied on the 1991 Oxford criteria and/or the 1994 Centers for Disease Control and Prevention criteria for M.E./CFS, including the PACE trial.

This is extremely concerning, given the US Agency for Healthcare Research and Quality’s conclusion that the Oxford criteria comes with a “high risk of including patients who may have an alternate fatiguing illness, or whose illness resolves spontaneously with time.” (Smith et al, 2014)

We do not support the Cochraine review’s conclusion that GET “probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies. The evidence regarding adverse effects is uncertain. Due to limited evidence it is difficult to draw conclusions about the comparative effectiveness of CBT, adaptive pacing or other interventions.”

However, Action for M.E.’s Big Survey of more than 4,000 people, key data from which will be shared at our AGM and conference next week, and Forward ME’s recent survey more than 2,200 people regarding their experience of treatments including GET, clearly show that the majority of people with M.E. find their symptoms worsen as a result of GET.

You can read more about our position on GET, and other management approaches for M.E., in our treatment and management pages.

Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser acknowledges in an accompanying statement that “a new approach to the publication of evidence in this area is needed; and, today we are committing to the production of a full update of this Cochrane Review, beginning with a comprehensive review of the protocol, which will be developed in consultation with an independent advisory group that we intend to convene. This group will involve partners from patient-advocacy groups from different parts of the world who will help us to embed a patient-focused, contemporary perspective on the review question, methods and findings. By forging better relationships with patients, as well as the groups that represent them and the clinicians who seek to treat them, we can improve the way in which future Cochrane Reviews in this area address important questions and meet patients’ and clinicians’ needs.”

We are encouraged by Dr Soares-Weiser’s commitment to meaningful collaboration with patients, and a comprehensive update of the Cochrane Review of GET for M.E./CFS, which will begin early next year.

Our Chief Executive, Sonya Chowdhury, adds: “It is essential that the review published yesterday does not add further confusion for healthcare professionals supporting people with M.E., given that it is based on an outdated protocol. The promised review must be based on recent knowledge and take account of the considerable concerns about the criteria used in the 2002 protocol. We are keen to see Cochrane progress this as soon as possible, with children and adults with M.E. at the very heart of it.