New guideline provides advice on recognising and diagnosing ME/CFS, but medical leaders say that the guidance does not go far enough 

Woman fatigue

Graded exercise therapy (GET) is no longer a recommended treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in new NICE guidance on the condition.

But, medical leaders representing several Medical Royal Colleges—including the Royal College of General Practitioners and the Royal College of Physicians—have signed a joint statement in response to the new guideline, stating that it does not go far enough. Although it acknowledges that the published guidance contains some ‘positive changes’, the statement said that the guidance understates ‘the importance of activity and exercise in the management of ME/CFS and the connection between people’s mental and physical health’.

The new guideline, which updates and replaces NICE Clinical Guideline 53, has been published after the last attempt to update it was postponed in August 2021. Since then, NICE has been holding round-table 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 that it is ‘now confident that the guideline can be effectively implemented’.

Graded exercise

GET has always been controversial for managing ME/CFS, and the new guideline says that 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.

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.’

However, the joint statement from the medical Royal Colleges points out: ‘As in many chronic conditions, people’s mental and physical health are intrinsically linked. This guidance risks undermining the importance of these links by dismissing the potential of treatments such as cognitive behavioural therapy … as of less value in alleviating symptoms than pharmacological interventions.

‘There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed, but the important thing now is that services are commissioned in a safe and effective way that does not disadvantage any patients being treated now or in the future.’

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 that earlier access to care may improve longer-term outcomes; accordingly, the qualifying time for diagnosis by a specialist team for persistent symptoms has been reduced from 4 months to 3 months.

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.

No specific diagnostic test

In a statement, the 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 Development 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.’

This article originally appeared on Medscape, part of the Medscape Professional Network.

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Lead image: Ivan Kruk/stock.adobe.com

Image 1: Ivan Kruk/stock.adobe.com