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​NICE ask for input on guideline on M.E./CFS

June 22, 2018

The National Institute for Health and Care Excellence (NICE) have released a draft scope for its revised guideline on M.E./CFS, and are asking for applications from people affected by M.E. to be lay members on the guideline development committee. Find out more about each of these opportunities below. 

Action for M.E. is a registered stakeholder in the NICE guideline process. We have been attending previous meetings with committee members to discuss how the new guideline can ensure appropriate health care for people with M.E, and want to hear your views on the draft scope.

Comment on the draft scope for the revised NICE guideline on M.E./CFS 

NICE have released a draft scope for the guideline on M.E./CFS, and we want to hear from you to inform our response.

Only registered stakeholders can submit a response, and while individuals cannot register as stakeholders, Action for M.E. have developed a survey to ask for your opinions on the scope. We are asking for the views of any person affected by M.E., including carers.

The scope explains why the guideline is needed and identifies what topics will be included and excluded from the guideline. The scope does not indicate what information or recommendations will be included in the final guideline. 

Our survey asks for your views on different sections of the scope, and whether you think it could be improved. There are 12 questions in total, and if you are not able to look at all of them you can choose to comment on whatever is most important to you. When answering the survey, it may be easier if you are able to refer to the draft scope. When we are asking about a particular section of the scope we have included the page and line numbers to indicate the relevant passage.

We are asking for your responses by Friday 20 July at 5pm. We will collate these to respond to NICE’s deadline on Thursday 26 July. Following this consultation, NICE will revise and finalise the scope, and then begin the process of drafting the guideline which takes up to two years. The draft guideline is scheduled to be released for consultation in April 2020.

Join the NICE guideline committee

As well as consulting on the draft scope, NICE have opened applications for lay members to join the M.E./CFS guideline committee. A lay member can be a person with M.E., someone who cares for a person with M.E., or anyone involved with a relevant voluntary organisation or support group.

NICE are looking for people who have an understanding of the condition, and the issues that are important to people with M.E. They especially welcome applications from across the range of severity, and from parents and carers of children, young people and adults, with M.E.

Committee members will need to be able to commit to taking part for two years. For 18 months, this will include attending meetings every 7-10 weeks, taking place in central London. If a committee member is unable to travel to a particular meeting, attendance via video link can be arranged by NICE. Additional responsibilities include reading committee papers, commenting on documents and responding to emails between meetings. More details about the role, included the commitments required and how to apply, can be found on the NICE website. You can email the Public Involvement Programme at NICE if you have any questions about the position or the application process. The closing date for applications is 5pm on Thursday 26 July 2018.