Both the UK Government’s 2025 ME/CFS Final Delivery Plan and the 2021 NICE guideline on ME/CFS recognised that many people with ME/CFS have experienced misunderstanding, stigma and a lack of recognition of the disease and the impact it can have on everyday life. Indeed, the results of the consultation on the Interim Delivery Plan highlighted a strong need for greater public awareness, better understanding, and more compassionate attitudes towards people living with ME/CFS.
To address this the Government committed to improving awareness of ME/CFS among both professionals and the wider public.
Commitments to promoting NHS England’s ME/CFS e-learning resources and sharing information through health, social care, education and community networks; updating and improving information resources so they reflect current evidence and lived experience; and involving people with ME/CFS in the development of training and educational materials to help tackle stigma and improve understanding we set out. In addition, there was an agreement for the
DHSC to develop and run a public awareness initiative on ME/CFS to promote wider awareness and understanding of the condition and the support available to people with ME/CFS and their families. This will be run in collaboration with internal and external stakeholders and is expected to improve the wider awareness and understanding of ME/CFS.
Tom Morrison MP has sought by a parliamentary question (UIN 13623) to discover more information on how people with lived experience of ME/CFS will be involved in the design and delivery of the awareness campaign. Sharon Hodgson MP Parliamentary Under-Secretary (Department of Heath and Social Care) responded
Lived experience had an integral role during the development of the final myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) delivery plan. The awareness plan will also require continued support from people with lived experience, and the ME/CFS community, for the distribution and promotion of any materials produced. The campaign will aim to focus on capturing attention and delivering key messages, which will then serve as a gateway to finding more information.
Departmental officials are currently considering how to involve people with lived experience of ME/CFS in the design and delivery of the ME/CFS awareness campaign, in addition to also exploring options for the format of the awareness campaign.
