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Updates on NICE review of CFS/M.E. guidelines

September 27, 2017

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

On the basis of evidence highlighted during an initial consultation, which include Action for M.E. reports Time to deliver and Close to collapse, NICE will be looking into a full update of the guideline.

NICE highlighted some of the themes that emerged from stakeholder comments, which include:

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

NICE have announced their plans to conduct a full review, having initially proposed not to update the guideline. M.E. charities and other organisations urged 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 comments, both individually and in a joint response with Forward M.E., that NICE had an ethical obligation to ensure clinicians and patients were 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 our findings in Time to deliver 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 report into social care Close to collapse 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 process for developing a guideline can take from 12 up to 27 months. At the beginning of the process, 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.”