This week the National Institute of Health and Care Excellence (NICE) held a roundtable to discuss the delayed publication of their updated ME guidelines. The Royal Colleges, NHS England and various patient organisations attended to discuss the delayed publication of NICE’s recommendations.
The ME commuinity was understandably frustrated when the updated publication of the NICE guidelines was delayed in August of this year. After 14 years of harmful recommendations NICE were due to change their recommendations on August 18th. However, at the last second the publication was delayed.
The roundtable offered a safe space for the 31 attendees to share their views on the proceedings. Under the Chatham House Rules attendees could report the discussions but not identify individuals’ views.
#MEAction UK volunteer, Janet Sylvester, attended the roundtable on behalf of #MEAction UK.
She told #MEAction UK:
“I felt this was a positive meeting. There were large areas of agreement from all attendees, including all acknowledging the terrible experiences people with ME have had to endure. Together, the representatives from ME patient organisations were able to strongly get across the reality for people living with ME. I’m optimistic the guidelines will be published.”
You can read Janet’s full report of the meeting on #MEAction UK’s website here.