Final ME/CFS NICE guideline recommends ‘personalised care and support plan’

NICE’s final guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) has recommended that patients receive a ‘personalised care and support plan’.

Today’s publication of the final guideline comes as NICE halted the publication of the long-anticipated update in August because of ‘strong views’ around management of the condition.

Much of the debate appeared to be around recommendations to not use graded exercise therapy (GET) and CBT as treatments for the condition.

It was reported that several members of the guideline committee had walked out over the fallout and the delay prompted heavy criticism from patient groups and charities.

After a ‘successful’ roundtable discussion to address concerns that had been raised by some professional bodies, NICE said it was now confident that the guidelines, which cover children, young people and adults could be effectively implemented across the system.

ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms, the NICE guidelines stress.

It outlines the condition as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties described as ‘brain fog’.

People with all four symptoms that have lasted three months or more should be referred to a specialist team and a range of management approaches should be offered depending on an individuals’ preferences and priorities, the guidelines state.

But any programme based on fixed incremental increases in physical activity or exercise such as GET, should not be used, NICE said. No therapy based on exercise or physical activity should be given as a ‘cure’.

Personalised exercise programmes can be offered in people with ME/CFS who want the option but it should be overseen by a specialist physiotherapist and reviewed regularly.

NICE said discussions during the guideline pause highlighted that the term ‘GET’ is understood in different ways and they have set out clear definitions.

The committee recommend that person centred energy management can be offered as a key component of a personalised management plan. Reviewed regularly, it can help people understand their energy limits so they can reduce the risk of overexertion worsening their symptoms.

NICE also said that although CBT has sometimes been assumed to be a cure for ME/CFS, it should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness.

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.’

Peter Barry, consultant clinical advisor for NICE and chair of the guideline committee, said the guideline would provide clear support for people living with ME/CFS, their families and carers, and clinicians.

‘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.’

Dr Charles Shepherd, medical advisor to the ME Association and one of the committee members from 2019 until he stood down this year said: ‘This is a very special day for people with ME – publication of a new evidence based NICE guideline which confirms that this is a serious and very debilitating medical disease. 

‘I particularly welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.

‘This new guideline will have a big impact on care for people with ME, and draws a line under the damaging therapies of the past.’

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NICE guideline highlights:

1.1.1    Be aware that ME/CFS:

• is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated
• affects everyone differently and its impact varies widely
• is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity

1. Healthcare professionals should recognise that people with ME/CFS need:
2. timely and accurate diagnosis so they get appropriate care for their symptoms
3. regular monitoring and review, particularly when their symptoms are worsening, changing or are severe

1.2.1    Explain to people presenting with possible symptoms of ME/CFS that there currently is no diagnostic test for ME/CFS and it is recognised on clinical grounds alone

1.2.2  Suspect ME/CFS if:

1. the person has had all of the persistent symptoms in box 2 for a minimum of 6 weeks in adults and 4 weeks in children and young people and
2. the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced
3. symptoms are not explained by another condition

1.2.5  Primary healthcare professionals should consider seeking advice from an appropriate specialist if there is uncertainty about interpreting signs and symptoms and whether an early referral is needed

1.5.2 Specialist teams should develop and agree a personalised care and support plan with the person with ME/CFS and their family or carers

1.10.2  Care for people whose ME/CFS is managed in primary care should be supported

by advice and direct clinical consultation from an ME/CFS specialist team

1.11.3  Help people with ME/CFS develop a plan for energy management as part of their care and support plan.

1.11.9 Do not advise people with ME/CFS to undertake exercise that is not part of a

programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms.

1.11.14 Do not offer people with ME/CFS:

• any therapy based on physical activity or exercise as a cure for ME/CFS
• generalised physical activity or exercise programmes – this includes programmes developed for healthy people or people with other illnesses

• any programme that does not follow the approach in recommendation 1.11.13 or that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy
•  

1.12.28 Discuss cognitive behavioural therapy (CBT) with adults, children and young people with ME/CFS (and their parents or carers, as appropriate). Explain:

• its principles, including that it may help them manage their symptoms but it is not curative

Source: NICE