https://www.bmj.com/content/389/bmj.r977
Opinion piece
Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write
Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250 000 people in the UK. Symptoms include fatigue, cognitive difficulties, pain, autonomic disturbances, disturbed sleep, and gastrointestinal upset. The National Institute for Health and Care Excellence (NICE) estimates that 25% of people with ME/CFS experience higher symptom levels and reduced function.
1 These disabilities, and the patients’ belief that they won’t recover, can harm their mental wellbeing.
2
Recovery is possible, but patients need help to find their path. A constructive starting point requires experienced practitioners to recognise that the evolved biological control systems responsible for maintaining safety can sometimes become dysregulated.
34 This perspective offers patients a coherent explanatory model and, for some, a foundation for meaningful therapeutic progress.
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Guidance from NICE in 2021 on managing ME/CFS states that “recovery” may be only “a long period of remission” and that “many will need to adapt to living with ME/CFS.”
7 For severe and very severe ME/CFS, the guidance states that patients may be in bed all day; may be unable to eat or digest; and may require a low stimulus environment in a dark, quiet room with little or no interaction because of hypersensitivity to light, sound, touch, movement, and smells.
1 A government consultation with charities and patients about implementing the NICE guidance concluded that doctors must understand that people with severe symptoms need palliative care.
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Death directly from ME/CFS is unlikely. Neither somatic pathology nor specific physiological disturbance has been reliably and consistently identified.
6 However, functional impairment may lead to malnutrition and dehydration—described as the cause of death of Maeve Boothby O’Neill, who died in 2021 at age 27.
8 The coroner at her inquest highlighted that the NHS had no specialist units for severe ME/CFS.
9 However, several specialist regional services for ME/CFS diagnose and treat mild and moderate presentations.
One specialist unit in the UK is at the Leeds National Inpatient Centre for Psychological Medicine. Some of the patients admitted have severe and complex ME/CFS. The Leeds centre delivers multidisciplinary inpatient care based on a biopsychosocial approach. This underpins much general practice in the UK, where symptoms and illness are considered not just in terms of the biology of a disease but also psychological (the influence of thoughts and emotions) and social dimensions (a person’s family, relationships, and societal beliefs).
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The Leeds unit employs highly trained and experienced staff in nursing, liaison psychiatry, occupational therapy, physiotherapy, cognitive behavioural therapy, dietetics, and pharmacy.
11 Although their numbers are small, the improvements are seen across all groups of patients and are consistent. In nine of the past 10 years, everyone discharged had shown improvement, with over 50% each year reporting a major improvement, and the Care Quality Commission rated the service as “outstanding” on effectiveness and praised its holistic approach.
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Philosophical approach
An advantage of the Leeds model is that it avoids continuous sensory deprivation and total bed rest, both of which are likely to harm health.
13 A literature review by the Norwegian Institute of Public Health found no evidence that shielding patients from sensory stimuli benefited those with severe fatigue.
14 A large international group of specialists in chronic fatigue conditions state that inactivity, bed rest, isolation, and sensory deprivation risk worsening symptoms and disability. They explain that fatigue after activity doesn’t necessarily mean that this is dangerous or indicate “a lack of energy in the body.” A gradual, controlled approach to increasing activity is an important part of rehabilitation.
6
The philosophical approach behind the Leeds centre and the Oslo Chronic Fatigue Consortium’s statement overcomes the longstanding problem of separating “mental” and ”physical” illness.
615 Specialists researching and treating these conditions view chronic fatigue conditions as a dysfunctional biological response orchestrated in the brain, influenced by expectations and conditioned responses.
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Recent advances in neuroscience have enhanced our understanding of the link between the brain and physiologically based symptoms.
181920 Subtle biological changes—such as increased sympathetic activity, decreased parasympathetic activity, reduced cortisol responsiveness to stress, and an activated immune system—can be attributed to a shift in the brain’s interpretation of the body’s condition.
321 Emerging evidence suggests that psychoeducation about the stress response can help reduce hypervigilance and accentuation of the dysfunctional biological response.
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This approach across a range of conditions has been described for many years,
23 underpinning national service planning in some countries. The Danish Health Care System for functional illness manages specialty specific functional somatic syndromes with common cognitive behavioural treatments, and patients can become self-supporting.
24 In contrast, the UK is following an outdated model, leading NICE to disallow cognitive approaches to help recovery or bespoke programmes designed to increase activity.
7
Inspiring hope, and changing the illness narrative, is helpful.
25 The unproved narrative of a disease with no cure, improvement, or recovery can be harmful and is erroneous.
6 Multidisciplinary, tailored approaches based on a biopsychosocial understanding can help patients and are urgently needed. Constructive dialogue between recovered and symptomatic patients, carers, and clinicians can help identify practical approaches to recovery.
2627 Above all, we must remind patients, their relatives, and doctors that even those with severe ME/CFS can recover
