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:
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:
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:
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.”
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