Activity management in chronic fatigue syndrome

• previous randomised controlled trials (1,2) have shown the benefits of graded exercise in the treatment of chronic fatigue syndrome (CFS)
• note though that analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective (3)
  • because of the failure to report harms adequately in the trials covered by the review, it cannot be said that graded exercise therapy is safe
  • analysis of the objective outcomes in the trials provides sufficient evidence to conclude that graded exercise therapy is an ineffective treatment for myalgic encephalomyelitis/chronic fatigue syndrome

NICE state (4):

Energy Management

Refer people with ME/CFS to a physiotherapist or occupational therapist working in an ME/CFS specialist team if they:

• have difficulties caused by reduced physical activity or mobility or
• feel ready to progress their physical activity beyond their current activities of daily living or
• would like to incorporate a physical activity or exercise programme into managing their ME/CFS

Incorporating physical activity and exercise

The NICE committee state with respect to the evidence base about physical activity and exercise programmes:

• In the committee's experience, people with ME/CFS have had varying results from physical activity and exercise programmes. The committee agreed it was important to discuss this with people with ME/CFS and to explain to them the possible risks and benefits
• Because of the harms reported by people with ME/CFS in the qualitative evidence, as well as the committee's experience of the effects when people exceed their energy limits, the committee recommended that people with ME/CFS should not undertake a physical activity or exercise programme unless it is overseen by a physiotherapist who has training and expertise in ME/CFS.
• The committee outlined what a personalised physical activity or exercise programme should, and should not, include. In developing recommendations on the content, approach and delivery of physical activity and exercise programmes, the committee considered the benefits and harms associated with graded exercise therapy that had been reported with ME/CFS across the quantitative and qualitative evidence, alongside their own experiences. They recognised that different definitions of the term 'graded exercise therapy' are used, and as a result the content and application of graded exercise therapy programmes differ. This has resulted in confusion. Taking into account descriptions of graded exercise therapy in the evidence they reviewed, the committee included a definition in this guideline to clarify what graded exercise therapy is intended to mean in the recommendation.
• The committee concluded any programme using fixed incremental increases in physical activity or exercise (for example, graded exercise therapy), or physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories, should not be offered to people with ME/CFS. The committee also wanted to reinforce that there is no therapy based on physical activity or exercise that is effective as a cure for ME/CFS.
• For people with ME/CFS who do choose to take part in a physical activity or exercise programme, this should follow the principles set out in this section and the energy management section.

For further details then see full guidance - NICE (October 2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

Definitions:

Care and support plan

• the personalised collaborative care and support plan is developed by the ME/CFS specialist team based on a holistic assessment. It is the basis for other assessments and plans in areas such as social care, energy management, physical activity, physical functioning and mobility, cognitive behavioural therapy and dietary management

Energy limit

• the amount of energy a person has to do all activities without triggering an increase or worsening of their symptoms

Energy management

• a self-management strategy that involves a person with ME/CFS managing their activities to stay within their energy limit, with support from a healthcare professional

Exercise

• Exercise is planned, structured, repetitive and purposeful activity focused on improvement or maintenance of 1 or more components of physical fitness. Exercise is a subcategory of physical activity

Flare-up

• a worsening of symptoms, more than would be accounted for by normal day-to-day variation, that affects the person's ability to perform their usual activities. Flare-ups may occur spontaneously or be triggered by another illness, overexertion or other triggers. Flare-ups usually occur as part of post-exertional malaise but it is possible for other symptoms, such as pain, to flare-up without post-exertional malaise. The worsening of symptoms is transient and flare-ups typically resolve after a few days, either spontaneously or in response to temporary changes in energy management or a change in treatment. A relapse lasts longer than a flare-up

Graded exercise therapy

• is defined as first establishing an individual's baseline of achievable exercise or physical activity, then making fixed incremental increases in the time spent being physically active

Physical activity

• any bodily movement produced by skeletal muscles that results in energy expenditure. It should not be confused with exercise. Physical activity in daily life can be categorised into occupational, sports, conditioning, household or other activities, and can be done during leisure time, to get around or as part of a person's work. See World Health Organization advice on physical activity. Physical activity has a health benefit for most people and many conditions, but in people with ME/CFS, physical activity may make their symptoms worsen

Relapse

• a sustained and marked exacerbation of symptoms lasting longer than a flare-up and needing a substantial and sustained adjustment to the person's energy management. It may not be clear in the early stages of a symptom exacerbation whether it is a flare-up or a relapse. Relapses can lead to a long-term reduction in the person's energy limits

Other resources for patients:

The ME Association www.meassociation.org.uk

Action for ME www.actionforme.org.uk

References:

1. Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with chronic fatigue syndrome. BMJ 1997;314:1647-52.
2. Reid S, Chalder T, Cleare A, Hotopf M, Wessely S. Chronic fatigue syndrome, BMJ 2000; 320: 292-6.
3. Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.
4. NICE (October 2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management