A new research paper on a guided graded exercise programme has received much media coverage, some support and a lot of questions and criticisms. Links to a number of these follow.

A summary of the paper’s conclusions can be found in the Telegraph:

Exercise can help chronic fatigue syndrome, study shows, by Sarah Knapton,
22 June 2017

Increasing exercise each day can help patients with Chronic Fatigue System to feel less tired and feel better, a new study suggests.

Scientists at Queen Mary University of London placed 200 people on a 12 week programme in which they were either encouraged by a physiotherapist to walk a little more each or given a programme of medical care including medication for depression, pain and insomnia.

After four months the mean fatigue score of the exercise group was four points lower than in the control group, on a scale of 100, which researchers said was a moderate but significant impact.  Physical function was also six points higher.

Lead author Dr Lucy Clark said: “We found that a self-help approach to a graded exercise programme, guided by a therapist, was safe and also helped to reduce fatigue for some people with chronic fatigue syndrome, suggesting that it might be useful as an initial treatment for patients to help manage symptoms of chronic fatigue syndrome.

“We are now looking at whether the effects were maintained beyond 12 weeks.

“The aim is to progress carefully to improve rather than pushing people too hard and towards a setback.”
CFS affects about seven in 1000 people and is characterised by chronic, disabling fatigue in the absence of an alternative diagnosis.

The self-help exercise programmed involved slowly building up physical activity levels after establishing a daily routine, with the support of a physiotherapist over the phone or Skype.   The research was published in The Lancet.

Action for ME’s Chief Executive, Sonya Chowdhury, challenges the findings: Action for M.E. comment on GETSET study in Lancet, 23 June 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.”

The original paper:

Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for chronic fatigue syndrome (GETSET): a pragmatic randomised controlled trial, by Dr Lucy V Clark, Francesca Pesola, Janice M Thomas, Mario Vergara-Williamson, Michelle Beynon, Prof Peter D White in the Lancet [22 June 2017]

GES is a safe intervention that might reduce fatigue and, to a lesser extent, physical disability for patients with chronic fatigue syndrome. These findings need confirmation and extension to other health-care settings.

A comment: This paper is accompanied by a comment by a practitioner of GET and CBT for people with CFS:

Guided graded exercise self-help as a treatment of fatigue in chronic fatigue syndrome, by Daniel J Clauw in the Lancet [22 June 2017]

A supporting article: another article in the BMJ also supports the approach, though most of the article is behind a paywall:

Self help approach to graded exercise may help chronic fatigue
syndrome, by Susan Mayor in British Medical Journal Vol. 357, p j3057
June 23, 2017

Responses criticising the approach have also been published:

Mitochondrial dysfunction needs treating Re: Self help approach to graded exercise may help chronic fatigue syndrome, Ellen C G Grant, 24 June 2017
[Physician and medical gynaecologist  Retired]

Why does the very important discovery that this complicated medical condition is due to impaired mitochondrial function – for a number of specific and treatable reasons – continue to be ignored?

Re: Self help approach to graded exercise may help chronic fatigue syndrome, by Ian Stirling [Medically retired], 23 June 2017

I am a patient with CFS. I am often bedbound, following trivial exercise (washing up).
The reasons I am bedbound is not due to cardiovascular or muscular insufficiency or avoiding exercise. I do not have Delayed Onset Muscle Soreness in the days afterwards. I have severe cognitive effects (n-back/… performance plummets). I have significantly reduced one-time maximal grip strength. Normal exercise response does not cause pain in the whole body following exercise of one muscle group, or the host of other symptoms.

Re: Self help approach to graded exercise may help chronic fatigue syndrome, by Anton Mayer, 23 June 2017

Susan Mayor states that the GETSET trial shows that graded exercise therapy can improve fatigue and physical functioning. Due to weaknesses in the trial design, it is not actually possible to distinguish biased self-reporting (“placebo effect”) from genuine improvement. Indeed, we know from previous studies that GET and CBT don’t lead to improvement on objective measures of health and functioning in CFS: their effect is most consistent with a small transient placebo effect. That this study was funded and is being taken seriously is very worrying.

More info about the trial:

Wolfson Institute of Preventive Medicine at Queen Mary University of London, the home of the trial, has published information about the trial: GETSET Trial FAQs

The Science Media Centre has published mixed responses from a number of their associates, 22 June 2017:

expert reaction to study on guided self-help graded exercise therapy as a treatment for chronic fatigue syndrome (CFS) 

Science daily blog post, 23 June 2017: Guided self-help approach to graded exercise program is safe, may reduce fatigue for patients with chronic fatigue syndrome

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