QUESTION: Dr Rupa Huq, Labour, Eailing Central and Acton: To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis.
ANSWER: Andrew Gwynne, Labour, Gorton and Denton – Parliamentary Under-Secretary of State at the Department of Health and Social Care:
“Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.
The Department funds research into ME/CFS through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.”
MEA Comment
We have a new Labour Government and this is a recurring parliamentary question on ME/CFS with the same ministerial answer.
As per the APPG on ME announcement, we understand the need to ensure that ME is kept firmly on the agenda of the new Government and that the All-Party Parliamentary Group (APPG) on ME will play an important part in this.
The ME Association will continue to campaign for people with ME/CFS and we would urge the new Labour Government to do its very best to ensure there are no further delays in publishing the Delivery Plan on ME/CFS.
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.
