The ME Association writes to the CEO of Cheshire and Merseyside NHS about out-of-date and inaccurate website information on ME/CFS.
Letter
Dear Graham Unwin
NHS Knowsley Clinical Commissioning Group: Commissioning Policy on ME/CFS (September 2023 update).
Inpatient care for treatment of Chronic Fatigue Syndrome (CFS) in section B9.1 (Mental Health/pages 25 – 26) of this document:
This information and guidance is out of date – as it is referenced to the now discarded and discredited 2007 NICE (CG 53) guideline on ME/CFS.
It is not consistent with the information and guidance in the new (October 2021) guideline on ME/CFS (NG 206).
In particular:
- NICE refers to ME/CFS
- NICE (and the NHS) does not classify ME/CFS as a mental health condition and recognises the WHO neurological disease classification of ME and CFS (in WHO ICD 10 G93.3)
- The new NICE guideline contains extensive information on the management of people with severe and very severe ME/CFS and factors which need to be taken into consideration when they are admitted to hospital
The section on ME/CFS does therefore need to be removed and properly updated as a matter of some urgency.
While I am here could I query:
a) What sort of specialist referral service is being provided by your ICB for the diagnosis and management of people with ME/CFS (as recommended in the new NICE guideline) and
b) What arrangements are in place for the management of people with severe and very severe ME/CFS who may require either domiciliary or hospital based care
Yours sincerely,
Dr Charles Shepherd
Hon. Medical Adviser to the ME Association.
We are placing a copy of this correspondence on the MEA website.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association.
Member of the 2018-2021 NICE Guideline Committee.
Member of the 2002 Independent Working Group on ME/CFS.
