On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be amended based on this workshop and then sent back out to all stakeholders for final comments. At the same time they will start recruiting members for the Guideline Development Group (GDG), which will be tasked with writing the new guideline.
#MEAction UK was represented by Nathalie Wright and Carolyn Leary, both volunteers. We would estimate there to be around a 50:50 split between patient/carer representatives and professionals. The workshop opened with an introductory presentation by staff at NICE, explaining the aims of the workshop and the NICE process and then an introductory speech by Dr Peter Barry who has been appointed as the chair of the guideline development group and a hello from Dame Llora Finlay, the vice chair.
The main part of the meeting, lasting more than 1.5 hours, was a discussion conducted at tables of around 12, including two people from NICE’s staff acting as facilitator and minute-taker. Each table worked through the first draft of the scope, exploring issues as they came up.
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