We’ve been gathering your feedback for weeks and now Action for M.E. have responded to the National Institute for Health and Care Excellence’s (NICE) consultation on the draft scope for the guideline on M.E.

Included in our response was the need for the document to better represent the severe symptoms of M.E. and the need for relevant professionals such as benefits assessors to know the NICE guideline is relevant to them.

Our response was based on responses to our survey, and highlighted the comments made by people affected by M.E. We’d like to thank everyone who took the time and energy to consider the scope and share their feedback with us.

The scope for a NICE guideline is intended to explain why the guideline is needed and identify what topics will be included and excluded from the guideline. Following this consultation, the feedback provided to NICE will inform the final scope for the new guideline.

The key points we highlighted in our response include:

• Post-exertional malaise (PEM) should be listed as the hallmark symptom of M.E., and describe the impact of PEM. PEM is what makes M.E. unique compared to other conditions, and that explaining is vital for health professionals to understand the condition.
• It should be highlighted that a wide-range of professionals should make use of this guideline. We recommended that NICE indicate that this guideline is relevant for benefits assessors, employers, schools, and social services, as all of these professionals require a good knowledge of M.E. to provide appropriate support for children and adults with the condition.
• The main outcomes should include objective measures, such as a sustainable return to work or education, either part-time or full-time. Including these ensures that there has been a verifiable change in a person’s condition, and that assessing their capability is not solely based on perceptions.

We have also submitted a response jointly with members of Forward M.E., a group of M.E. charities and campaigners convened by the Countess of Mar.

You can read Action for M.E’s full response to the consultation. The scope will be amended and finalised based on the comments NICE have received, and the committee will begin the process of drafting the complete guideline. It is expected this will be completed by April 2020, at which time stakeholders and people with M.E. will have an opportunity to review and comment on the guideline.

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