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What is the consultation on the NICE M.E. guideline?

In September 2017, the National Institute for Health and Care Excellence (NICE) announced a full review of its guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management, following consultation with stakeholders including Action for M.E.

NICE is part of the NHS and is responsible for providing national guidance on treatments and care for people using the NHS in England and Wales.

The importance of patients’ views and experience in shaping the revision of this guideline was frequently highlighted at a stakeholder engagement workshop attended by Action for M.E. in January 2018. A report from the meeting is now available to read.

Some of the issues/inclusions NICE is considering include: 

  • changes to the diagnostic criteria: newer diagnostic guidelines have been introduced in the US and the criteria currently used by NICE have been criticised as too broad
  • data from patient surveys regarding the safety and efficacy of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) contradicting findings from randomised controlled trials
  • introducing a section specifically on M.E. in children, which is not currently mentioned, to raise awareness and increase the knowledge of professionals
  • updating the definition and aetiology, for example using newer terms for the disease and a greater consideration of biological models.

In February 2018, NICE confirmed that a further workshop will be held with stakeholder organisations in May to discuss the scope of the guideline; and that the guideline committee will include four people with the condition or their carers rather than the usual two. 

Why did NICE decide to review the guideline?

M.E. charities and other organisations have frequently highlighted the need for changes to the guideline, based on changing policy and practice globally. In particular, US agencies no longer recommend CBT or GET, the interventions recommended in the guideline. Action for M.E. submitted detailed comments, both individually and in a joint response with Forward M.E., to NICE's consultation on reviewing the guideline, highlighting that NICE has an ethical obligation to ensure clinicians and patients are fully aware of international policy and practice when considering any health intervention.

We stated that:

  • there is not presently a conclusive evidence base for treatments for M.E., including those recommended in the guideline such as CBT or GET
  • the current evidence base has led major international health agencies, including the Centers for Disease Control and Prevention in the US, to alter their guidance regarding CBT and GET
  • NICE has an ethical obligation to present a full, accurate and balanced picture of current international clinical practice when it comes to managing and treating M.E. The guideline in its current form does not do this.

We also highlighted findings from our 2014 M.E. time to deliver report that a majority of people with M.E. found pacing to be helpful, and while some people found either CBT or GET helpful, a considerable proportion also felt that their condition got worse following these interventions. NICE determined that these findings, as well as those in our 2015 Close to collapse report, which, that 97% of survey respondents experienced two or more difficulties with the daily living activities listed in the 2014 Care Act, met criteria to be included in the surveillance review and may potentially impact on the guideline’s current recommendations.

As well as sharing the experiences of people with M.E., Action for M.E. will call for the updated guideline to:

  • recognise the experiences of people with M.E. and take account of how these impact on the guideline recommendations, including the significant number of patients who state that pacing has been helpful for them
  • ensure it provides a full and accurate picture to patients and clinicians of the diversity of current international practice
  • recommend further biomedical research into the aetiology and potential treatments of M.E./CFS, to increase knowledge and understanding of the condition

The timeline for reviewing the guideline has now been confirmed. NICE developers will draft a scope for the guideline, consulting with stakeholders which include Action for M.E., before reviewing evidence and drafting the full guideline. We will continue to provide updates on the NICE guideline throughout the review process.

Sonya Chowdhury, Chief Executive of Action for M.E., said “It is very encouraging to hear that NICE have taken into account the evidence submitted by us and other advocates and decided to review the guideline in full. It is essential that the guideline enables patients to make an informed choice about their healthcare, and Action for M.E. will continue to engage with NICE to ensure that the new guideline listens to the voices of people with M.E.”