NICE Committee Member Community Call Review

Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline process and answer questions.

Adam Lowe is a person with ME and has been supporter of various ME organisations, including #MEAction UK and Science for ME. He was one of five lay members on the committee.

Caroline Kingdon is a registered nurse and research fellow, working for CureME on the UK ME/CFS Biobank based at the London School of Hygiene and Tropical Medicine since 2013. 

If you missed it, you can watch the recording on YouTube here, Facebook here, or below. 

Community members asked some fantastic questions, covering a wide variety of topics. Some of the subjects touched on included:

  • Why NICE paused the publication
  • Removal of Graded Exercise Therapy (GET) and concerns over it being offered under a new name
  • Why ME is still so stigmatised in 2021
  • Long Covid and links to the ME guideline
  • Ensuring patient involvement at the same level is replicated elsewhere in research 

There was much discussion and interest in the next steps now the guideline has been published. #MEAction UK is working hard planning further actions. If you want to get involved, the first step you can take is to email your GP practice to tell them about the new NICE ME/CFS guideline using our Dear Doctor template email, and remember to let us know if they get back to you.

We’d also like to share some other ongoing ME projects that may be of interest to you:

  1. There are two petitions you can sign to ask for the setting up of a method for reporting harms here and here.
  2. The DecodeME study is starting recruitment in the New Year. To register your interest and follow updates, information is available on their website here.
  3. The new ME Local Network is growing. If you are an organiser for your local ME friendship and support group, organisation or charity, you can email [email protected] to find out more and get involved.

Thanks to everyone who took part, especially Adam and Caroline for giving up their time.

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