Moderator note: This thread is for submissions made and submitted by various stakeholders on the draft scope for the NICE ME/CFS Guidelines Review. Discussions on the draft scope can be found in these threads: Discussion of first section of draft scope (members only) Discussion of second section of draft scope (members only) Discussion of third section of draft scope (members only) General discussion thread (public) - includes links to the draft scope S4ME draft submission discussion thread (members only) End of moderator note Action for ME have published their response to NICE https://www.actionforme.org.uk/news/action-for-me-responds-to-nice-consultation/ 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.