1. Objective:

The meeting was held to provide feedback from those who attended the NICE roundtable meeting on Mon Oct 18th. The Chatham House Rule, which prohibits attributing comments, was respected.

  1. Feedback/Comments:
  • The meeting was optimistic, constructive and well chaired.
  • The team from NICE handled themselves very well.
  • NICE responded to most of the comments and challenges and our representatives only needed to contribute when called upon (which was our agreed strategy).
  • There appeared to be three overriding concerns: (1) ignorance – and the critical need for training and education across the  medical establishment (2) semantics and words matter – the recommendation for some minor ‘tweaks’ to the language used (3) deep concerns about commissioning services and resources.
  • Publication is likely to be sooner rather than later, although the final document may be sent to the attendees for comment which may mean further delays.
  • Examples of best practice were recommended.
  • ‘PEM’ was accepted.
  • The possibility of a joint statement with the participants and an ongoing ‘forum’ to maintain momentum, collaboration and understanding.
  • Our impression was that there was grudging acceptance of the guidance by the objectors.
  • Ongoing concerns around safeguarding of children there was robust input from “our side” in response to the points raised, with provision of context; indications were that the final guideline will if anything be even clearer on this (hard to say more in view of CHR)1`
  1. Next Steps:
  • Our preparation paid off and Peter White’s immense contribution was acknowledged and thanked.
  • We now need to ready for imminent publication
  • The immense task of ‘rolling-out’ the new guidelines is to become a priority and a plan and programme are to be agreed (NM).
  • Case histories are to be published (WW).
  • Explore a recommendation to introduce a ‘yellow card’ system.
  • Approach BACME to foster greater co-operation.
  • All policies, strategy and implementation are to put the patients’ care FIRST.
  • A statement is to be published within the next 24 hours which members will have sight of first so their comments can be taken on board.
  • PW is to distribute his comprehensive prep documents to members.
  1. AOB:
  • The implications of Long Covid for ME are to be discussed further at the next meeting.
  • Members are to be consulted on the introduction of SLACK to improve communication and consultation.