Highly trained and experienced physiotherapists are playing their part in delivering care to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at a specialist unit in Leeds.
The work of the Leeds National Inpatient Centre for Psychological Medicine is highlighted in an opinion article published earlier this month (14 May) in The BMJ. The first author is Alastair Miller, a former consultant physician in infectious disease and internal medicine and clinical lead at the Liverpool Chronic Fatigue Syndrome Service.
Along with his three co-authors – recovered patient Fiona Symington, a research assistant in psychology, Paul Garner, a professor emeritus, and paediatrician Maria Pedersen – Dr Miller calls for a radical reframing of beliefs about the illness.
This, coupled with specialist rehabilitation, can help people with severe ME/CFS along the path to recovery, the authors argue.
Praise for Leeds unit
Some of the patients admitted to the Leeds centre have severe and complex ME/CFS, and receive 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),’ Dr Miller and his colleagues note.
As well as physiotherapists, the Leeds unit employs highly trained and experienced staff in the fields of nursing, liaison psychiatry, occupational therapy, cognitive behavioural therapy, dietetics and pharmacy.
‘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 per cent each year reporting a major improvement, and the Care Quality Commission rated the service as “outstanding” on effectiveness and praised its holistic approach.’
‘Constructive dialogue between recovered and symptomatic patients, carers, and clinicians can help identify practical approaches to recovery. Above all, we must remind patients, their relatives, and doctors that even those with severe ME/CFS can recover’ [Alastair Miller et al]
Philosophical approach
Dr Miller and his co-writers praise the Leeds model for avoiding continuous sensory deprivation and total bed rest – both of which, they claim, are likely to ‘harm health’. Norway-based researchers found no evidence to support shielding patients with severe fatigues from sensory stimuli, while an international group of chronic fatigue specialists stated that inactivity, bed rest, isolation, and sensory deprivation ‘risk worsening symptoms and disability’.
‘They [the Oslo Chronic Fatigue Consortium] 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’, Dr Miller and his co-authors suggest.
The authors back a philosophical approach that manages to hurdle the longstanding problem of separating ‘mental and ‘physical illness. ‘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,’ they state.
Insights from neuroscience
Dr Miller and his co-authors state: ‘Recent advances in neuroscience have enhanced our understanding of the link between the brain and physiologically based symptoms. 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.
‘Emerging evidence suggests that psychoeducation about the stress response can help reduce hypervigilance and accentuation of the dysfunctional biological response,’ they note.
NICE guidance criticised
The Danish Health Care System is lauded by the authors for its approach to functional illness, which manages specialty-specific functional somatic syndromes with common cognitive behavioural treatments. As a result, patients can become self-supporting, while, by contrast, they suggest that provision in the UK is based on an ‘outdated model’. This, the authors claim, has resulted in the National Institute for Health and Care Excellence (NICE) disallowing cognitive approaches to help recovery or bespoke programmes designed to increase activity.
Inspiring hope, and changing the illness narrative, is helpful, the authors conclude, arguing that the ‘unproved narrative of a disease with no cure, improvement, or recovery can be harmful and is erroneous’.
‘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. Above all, we must remind patients, their relatives, and doctors that even those with severe ME/CFS can recover.’
Patients need help to find their ‘own path’
About 250, 000 people in the UK are affected by ME/CFS. Symptoms include fatigue, cognitive difficulties, pain, autonomic disturbances, disturbed sleep and gastrointestinal upset. NICE estimates that one person in four with ME/CFS will experience higher symptom levels and reduced function. According to Dr Miller and his colleagues: ‘These disabilities, and the patients’ belief that they won’t recover, can harm their mental wellbeing.’
Recovery is possible, they stress, 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.
‘This perspective offers patients a coherent explanatory model and, for some, a foundation for meaningful therapeutic progress.’
To access the full version of the article – titled Patients with severe ME/CFS need hope and expert multidisciplinary care – see: https://www.bmj.com/content/389/bmj.r977
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