NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS

Russell Fleming, Content Manager, ME Association

The National Institute for Health and Care Excellence (NICE) issued an embargoed press release last night about the new draft guideline for ME/CFS.

The clinical guideline is very important as it provides a framework for care in the NHS in England, and influences care in Wales, Northern Ireland, and, Scotland.

The NICE press release includes comment from Paul Chrisp (Director of the Centre for Guidelines at NICE) and Peter Barry (Chair of the ME/CFS Guideline Committee). It has been reproduced in full below.

The draft guideline was made available on the NICE website this morning and forms the essential part of the stakeholder consultation which will run until 22 December. The ME Association will be preparing its response over the next few weeks.

Please refer to the next ME Association blog that will carry more information about the new guideline along with a website survey that seeks to canvass the views from people in the ME/CFS community.

The ME Association’s Initial Reaction

“We are very pleased to find that NICE has addressed many of the defects in the current guideline on ME/CFS.

“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.

“We do, however, have concerns about some of the diagnostic recommendations. And there is a need to provide far more information on symptom management that is specific to ME/CFS.

“As NICE is now preparing a rapid guideline on Long COVID, a post viral syndrome that has a number of symptoms that overlap with ME/CFS, we hope that the new ME/CFS guidance on activity and energy management will also be used to help people with Long COVID.

“We will be consulting with our members on the draft and sending in a detailed stakeholder response to NICE in December.”

Media Articles

The Times article by Sean O’Neill and Kat Lay in the paper edition today

Daily Telegraph

Stop telling people with ME to increase their exercise, new guidance says

By Lizzie Roberts

Graded exercise therapy is currently listed on the NHS website as a ‘specialist treatment’ for ME and chronic fatigue syndrome

Doctors have been told to stop telling people with ME to increase their exercise as it may worsen their symptoms, according to new guidance. 

Instead, physical activity should be advised so that it does not exceed an individual’s “energy limits” and only delivered or overseen by a physiotherapist or occupational therapist with expertise in the area.

The draft guidelines, published today by NICE (National Institute of Health and Care Excellence), covers diagnosing and managing ME (myalgic encephalomyelitis) and chronic fatigue syndrome (CFS).

Around 250,000 people in England and Wales have ME/CFS, with around 2.4 times as many women affected as men.

The chronic medical condition has significant consequences on a patient’s personal, social and economic life, impacting both their emotional wellbeing and quality of life. 

Graded exercise therapy (GET), based on fixed incremental increases in exercise, or structured activity based on deconditioning being the cause of ME/CFS, should not be offered, the guidelines state. 

“Do not advise people with ME/CFS to undertake unstructured exercise that is not part of a supervised programme, such as telling them to go to the gym or exercise more, because this may worsen their symptoms,” it reads.

GET is listed on the NHS website as a “specialist treatment” for ME/CFS. “After finding out what you can already do comfortably, the length of time you exercise and the intensity will gradually be increased,” the website says. 

But the new guidance states people with ME/CFS have had “varying results” from such physical exercise programmes and adds:

“There is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS”.

Paul Chrisp, director of the Centre for Guidelines at NICE said the new guidance will provide “much needed clarity” and set “new standards” for health professionals when treating ME/CFS patients.

“ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging and accepting the condition and its impact,” he said.

“This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of graded exercise therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them.”

Based on evidence submitted to the committee, it also recommended CBT (cognitive-behaviour therapy) should not be seen as a treatment or cure for ME/CFS. 

The NICE Press Release

NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS

NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

It covers the identification and assessment of ME/CFS before and after diagnosis, its management, monitoring and review, information, education, and support for people with suspected or diagnosed ME/CFS and their families and carers, as well as information, education and support for health and social care professionals.

The draft guideline makes separate recommendations for children and for people with severe or very severe ME/CFS. It recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms, particularly where there is the potential for an intervention to benefit some people but cause harm in others.

It stresses the need for a tailored, individualised approach to care based on establishing a partnership between the person with ME/CFS and those providing their care that allows joint decision making and informed choice.

The draft guideline also highlights the importance of ensuring that people remain in their ‘energy envelope’ when undertaking activity of any kind. It recommends that a physical activity programme, in particular, should only be considered in people with ME/CFS in specific circumstances.

The draft guideline says that any physical activity programme should begin by establishing the person’s physical activity capability at a level that does not worsen their symptoms. It also says a physical activity programme should only be offered on the basis that it is delivered or overseen by a physiotherapist or occupational therapist with training and expertise in ME/CFS and is regularly reviewed.

Because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits, the draft guideline says that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET) should not be offered for the treatment of ME/CFS.

Similarly, based on criticisms in the evidence from patient experience of CBT being used as a treatment for ME/CFS, the draft guideline emphasises that CBT is not a treatment or cure for the condition. However, as a supportive psychological therapy which aims to improve wellbeing and quality of life, the draft guideline says CBT may be useful in supporting people who live with ME/CFS to manage their symptoms. It should, therefore, only be offered in this context.

Paul Chrisp, director of the Centre for Guidelines at NICE, said:

“ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognising, acknowledging and accepting the condition and its impact. This has been compounded further by a lack of effective treatments, wide variation in access to services, and by controversy over the use of graded exercise therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them.

“The recommendations in this draft guideline have been developed by an independent committee that was guided not just by the clinical evidence, but also by the experience and testimony of people with ME/CFS. The result is a guideline that will provide much needed clarity, set new standards for health professionals and ensure that people with ME/CFS have access to the right care and support.”

Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester and chair of the guideline committee, said:

“This guideline reinforces the legitimacy of this biomedical disease and aims to reduce the disbelief and stigma felt by people with ME/CFS. It recognises the pressing need for training and education for health and social care practitioners in this neglected field.

“The draft guideline highlights post-exertional symptom exacerbation, including debilitating fatigue, as core to ME/CFS, so critically it recommends that graded exercise therapy should not be offered as a treatment.

“It acknowledges the profound needs of people with severe ME/CFS and their carers whose lives are hugely impacted by ME/CFS, and states that this unique patient group should be treated with respect, dignity, and empathy.”

The draft guideline recommends reducing the time from 4 months to 3 months that a person needs to have persistent symptoms before a diagnosis of ME/CFS can be confirmed. It says that people should then be directed to a specialist team (in the case of children this should be a paediatric specialist team) experienced in the management of ME/CFS to confirm their diagnosis and develop a personalised management plan. This will enable people to access care earlier and could potentially improve longer term outcomes.

A key component of a personalised management plan highlighted in the draft guideline is energy management. This is a self-management strategy led by the person themselves with support from a healthcare professional that can be applied to any type of activity (cognitive, physical, emotional, or social). Reviewed regularly, it is designed to help people understand their energy envelope so they can reduce the risk of overexertion worsening their symptoms.

Other components of a personalised management plan recommended in the draft guideline include symptom management, managing flares and relapse, support for activities of daily living and education, training, or employment support needs.

ENDS.

The ME Association

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