NICE Publishes Delayed ME/CFS Guidance After Summer Controversy

Editor's note, 29 October 2021: This article was updated with additional comment.

Graded exercise therapy is no longer a recommended treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in new National Institute for Health and Care Excellence guidance.

A new guideline has been published after the last attempt to update it was pulled at the last minute in August. Since then, NICE has been holding roundtable events with an independent chair to "better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation".

In a news release, NICE said it is "now confident that the guideline can be effectively implemented".

However, there's been a mixed reaction from some experts.

Complex Chronic Condition

The guideline describes ME/CFS as "a complex, multi-system, chronic medical condition that has considerable personal, social and economic consequences and a significant impact on a person's quality of life, including their psychological, emotional and social wellbeing," and says that there is no ‘one-size-fits-all’ approach for managing the condition.

NICE says earlier access to care may improve longer-term outcomes and the qualifying time for diagnosis by a specialist team for persistent symptoms is reduced from 4 months to 3.

Symptoms to consider for suspected ME/CFS include:

Debilitating fatigue worsened by activity
Post-exercise malaise
Unrefreshing sleep or sleep disturbance
Cognitive difficulties, such as 'brain fog'

Once diagnosis is confirmed, a holistic personalised management plan should be prepared with agreed goals and approaches.

Graded Exercise

Graded exercise therapy (GET) has always been controversial for managing ME/CFS and the new guideline says any programme based on fixed incremental increases in physical activity or exercise should not be offered as a treatment.

Instead, the guideline promotes person-centred energy management that can be applied to cognitive, physical, emotional, or social activities.

Cognitive behavioural therapy (CBT) is not seen as a 'cure' for the condition but may be offered to support symptom management.

No Specific Diagnostic Test

In a statement, Chair of the guideline committee, Peter Barry, said: "We know that people with ME/CFS have had difficulty in getting their illness acknowledged, and the guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test for it. The guideline emphasises the importance of a personalised management plan for areas such as energy management - including the importance of rest and staying within the individual’s energy limits - the treatment of specific symptoms, and guidance on managing flares and exacerbations.”

Paul Chrisp, director of the Centre for Guidelines at NICE, said: "As well as bringing together the best available scientific evidence, we’ve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented."

Baroness Finlay, vice-chair of the guideline committee, added: "The committee members involved in this guideline have worked particularly hard to ensure care becomes more empathetic and focused on the individual’s needs."

Mixed Reaction

Experts have been commenting on the guidance via the Science Media Centre.

"This is a transformative step for treatments offered to ME/CFS patients in the UK," said Dr Karl Morten, principle investigator at the Nuffield Department of Women's & Reproductive Health, University of Oxford.

Trudie Chalder, professor of cognitive behavioural psychotherapy, Institute of Psychiatry Psychology & Neuroscience, King's College London, said: "The NICE guidelines for CFS/ME are at odds with the research evidence. Researchers from different Institutions in different countries have found graded exercise therapy and cognitive behaviour therapy to be effective for some patients with CFS. Evidence has shown they reduce fatigue and improve functioning without harm, if delivered by trained therapists in specialist clinics. Being a clinician and researcher in this field I can’t help but think clinicians will be confused by this message from a respected organisation."

Caroline Kingdon, research fellow, research nurse and UK ME/CFS Biobank lead, London School of Hygiene & Tropical Medicine, said: "The new NICE guideline will positively influence the future diagnosis and treatment of people with ME/CFS in the UK and beyond."

She added: "While treatments that could cause further harm to people with ME/CFS have been removed, CBT continues to be recommended as an adjunct therapy – as in any chronic illness. Those profoundly affected by ME/CFS and their carers will welcome the emphasis on the provision of individualised care by a multidisciplinary team. The guideline promises to treat people with ME/CFS with compassion, ensuring that the care they receive is safe and of the highest standard, and is delivered appropriately according to the needs of the individual."

Peter White, emeritus professor of psychological medicine, Queen Mary University of London (QMUL), said: "Having looked after many patients with this illness, I worry that this guideline seems to suggest that patients need to learn to live with CFS/ME, rather than be helped to recover from it. NICE have banned graded exercise therapy, in spite of it being found to be helpful in a major Cochrane systematic review, while recommending an energy management programme, which involves 'staying within your energy limits', for which there is little evidence for it helping, and some evidence that it doesn't."

Dr Alastair Miller, consultant physician in infectious disease and internal medicine, said: "It is unfortunate that NICE continue to misrepresent GET as 'fixed incremental increases in physical activity or exercise' whereas in practice, the approach in most CFS/ME clinics has always been to tailor increasing activity to individual's needs and requirements in line with their current recommendations in section 1.11. It is also unfortunate that they say that exercise/activity cannot be regarded as a 'cure' for CFS/ME and yet they accept that it may relieve symptoms. There is no such thing as asymptomatic CFS/ME therefore if you have no symptoms you have no disease. It is unfortunate that so much emphasis is given to working 'within current energy limits' rather than a gentle and controlled pushing of those limits. However, it is to be welcomed that clinics will still be able to provide appropriate personalised activity and exercise programmes for those patients in whom it is felt to be appropriate."

The guidance was welcomed by the group Action for ME. Medical Adviser, Dr David Strain, said: "The Guideline should drive better acceptance of ME as a serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive."

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