Humber and North Yorkshire Integrated Care Board: Chronic Fatigue Syndrome
(asked on 2nd September 2024) - View Source
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department are taking to support (a) the Humber and North Yorkshire Integrated Care Board and (b) people diagnosed with myalgic encephalomyelitis.
NHS England is responsible for allocating funding to integrated care boards (ICBs), including the Humber and North Yorkshire ICB, which are in turn 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 NICE guidelines provide recommendation on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach involving access to a range of health and social care professionals based on needs.
The Department has funded the £3.2 million DecodeME study with the Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.
A public consultation on the interim delivery plan for ME/CFS was run in 2023, and it is a priority of ours to publish the response to this consultation. Departmental officials are in the process of finalising a report summarising the responses. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.