Today (03.10.24), the Times newspaper has published in print a letter from Professor Baroness Finlay of Llandaff and Dr Peter Barry, the Vice-chair and chair of the committee for the 2018-2021 NICE guideline on ME/CFS in response to the following article.
Letter
Specialist ME care
Sir, Further to your report “NHS bosses reject calls for specialist ME care” (Sep 27), over almost three years a committee of the National Institute for Health and Care Excellence, which included patient representatives, carefully reviewed evidence around myalgic encephalomyelitis/chronic fatigue syndrome. The revised guideline, published in 2021, covers every aspect of the condition in children, young people, and adults, including what support should be offered to people with suspected or diagnosed ME/CFS and their families and carers.
We made clear recommendations that patients with ME/CFS need specialist services that are empathic, focusing on the individual’s needs, and that research is needed into the diagnosis and management of ME/CFS and its complications. We have been deeply disappointed that the guideline recommendations have not been implemented by those commissioning clinical services, and hope that the coroner’s report will lead to much-needed change.
Professor Baroness Finlay of Llandaff & Dr Peter Barry
Vice-chair and chair, NICE guideline on the diagnosis and management of ME/CFS
Further information
- The ME Association (TW: upsetting content): Maeve Boothby O’Neill Inquest – Regulation 28 Report to be issued | 27th Sept 2024
- The ME Association: The NICE Guideline on ME/CFS
