#MEAction UK response to NICE 2017

#MEAction UK response to NICE 2017
Background information
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

Facebook
Twitter
WhatsApp
Email

2 thoughts on “#MEAction UK response to NICE 2017”

  1. Well done!!! Makes me proud to think work of this quality was produced in 2 weeks by people with little energy and brain fog…..You did a great job and I do hope they listen.

  2. I have just read through your response to NICE. It is so clear concise and yes comprehensive. I congratulate you all! I would also like to send my thanks and appreciation to everyone who contributed to this excellent work.

Comments are closed.

Latest News

Image is a sky blue rectangle, with an image of the #MEAction Maryland's logo that has the words Maryland State Chapter over an image of a lighthouse. On the righthand side if the image are the words, Join #MEAction's Marylans's #HelpMESenator Campaign in black font.

Join #MEAction Maryland’s #HelpMESenator Campaign

We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise

Read More »
a collection of millionsmisisng pictures featuring people protesting over the years in red shirts and with protest signs. white dashses connect the photos. the words words "the Story of the #MillionsMissing" is in white font in the top lefthand corner with the #MEAction logo there. The words "Coming Soon" is handwriting font is in the top righthand corner.

“#MillionsMissing is our drumbeat”–Preview Party 9/24

RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST! RSVP & Get Zoom Link Here We have always had to be creative in telling Our Story – the story of M.E. – to the world

Read More »