#MEAction UK response to NICE 2017
UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME is perceived in other countries, so it is not an isolated UK problem.
It is clear to us that the 2007 guidelines require an update, so we were dismayed to hear that NICE had looked at the evidence and is inclined to think no update is required. In July 2017 stakeholder organisations were given two weeks to respond to the proposal not to update (link https://www.nice.org.uk/guidance/cg53/documents/surveillance-review-proposal). Two weeks to agree and write an effective argument, at a time when those with milder ME were flying off on holiday. For us, as a grassroots network of people with ME, this timeframe seemed like an almost insurmountable barrier to full participation.
However, with a team of about fifteen people we rallied together to team write. We got advice on wording from experts and references from the wider online community. We busied ourselves with writing and commenting (up to the limit of how busy a group of mostly people with ME can be!). What has resulted from our team effort is an unexpectedly comprehensive explanation of our reasons for disagreeing with the no update proposal. We hope it will also be useful for you all as a general document about the state of play for ME UK politics and research in 2017.
This is our response to NICE: PDF / HTML
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed