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Action for M.E. comment on GETSET study in Lancet

June 23, 2017

Some people with M.E. report that using a guided self-help version of graded exercise therapy (GET) helps improve symptoms, says a study published yesterday in the Lancet.

Two hundred people with M.E. (diagnosed using criteria set out in the NICE guideline) took part in the 12-week study. Half were randomly assigned to receive specialist medical care alone, such as prescriptions or advice regarding medication. The other half received guided graded exercise self-help (GES) in addition to specialist medical care; this involved slowly building up physical activity levels, after establishing a daily routine, with the support of a specialist physiotherapist by phone or Skype.

Results indicate that:

  • 42% of participants in the GES group adhered to the programme “well” or “very well”
  • the mean fatigue score in the GES group was four points lower than in the group receiving specialist medical care alone; the mean physical function score was six points higher in the GES group
  • when rating their overall health, 18% people in the GES group reported feeling “much better” or “very much better,” compared to 5% in the specialist medical care group
  • 10 of 97 participants in the GES group dropped out of the study, compared to two in the specialist medical care group.

Action for M.E. comment

Sonya Chowdhury, Chief Executive, Action for M.E., says, “People living with M.E. urgently need access to appropriate care to support them in managing complex and challenging symptoms. While this study shows moderate improvements for those taking part, it’s essential to note that only a minority of patients – one in five – reported feeling much or very much better.

“Limitations to this study are made clear in the paper – in addition to these, we note that the most commonly chosen activity by those taking part was walking. This indicates that those bed and/or housebound with the more severe form of M.E., who are frequently too ill to undertake basic self-care, were unlikely to have been included: even carefully managed activity is rarely, if at all, possible for this very vulnerable patient group.

"It is extremely frustrating to see the study being reported by the Telegraph with the headline Exercise can help chronic fatigue syndrome. Exercise as it's generally understood - going for a run, playing football - is NOT the same as graded exercise therapy, which is a specialised symptom-managed approach that should be delivered by an experienced professional. To conflate the terms plays down complexities involved in managing M.E. and perpetuates misunderstanding about this devastating condition.

“On a related note, the authors state that ‘relative efficacy of a behavioural intervention does not imply that CFS is caused by psychological factors.’ But it cannot be denied that the continuing emphasis on behavioural treatments for M.E., particularly when we know so little about the biology of the condition, contributes to continuing misunderstanding and stigma that prevents children, families and adults affected by M.E. accessing the care and support they need.

“This situation will only change if we see significant mainstream investment into collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to targeted treatments for everyone with M.E., not just a minority.”