Government announces new plan to help those impacted by ME/CFS

Interim delivery plan outlines 21 actions to improve understanding, research and care for those living with myalgic encephalomyelitis/chronic fatigue syndrome

  • Plan has been developed in close collaboration with people living with the condition, carers and family members, and healthcare and support professionals
  • Government invites views on interim delivery plan with consultation open for eight weeks

Plans to help improve the lives of people living with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) have been outlined by the government today and a consultation launched on how best to deliver the plan.

The interim delivery plan identifies how care and support for those who experience ME/CFS can be practically improved, and sets out the next steps necessary to improve understanding of ME/CFS and support for those affected.

Developed around three key themes - research, attitudes and education, and living with ME – the government is also launching a consultation on the proposals, inviting views on how well the proposed actions address issues important to the ME/CFS community, and to help identify where it needs to go further. This consultation will inform development of a final plan.

Minister of State for Health, Will Quince, said:

"We know more needs to be done to understand this debilitating illness and to make sure those affected feel heard and understood by the health service and society more widely.

"To help us ensure this plan is as thorough and considerate of personal experience as possible in its delivery, it’s important that those living the condition, their families, carers and professionals share their views."

ME/CFS affects the lives of children and adults across the country and can be an incredibly debilitating condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education - especially for the estimated 25% of people who have severe or very severe symptoms.

Whilst there are currently no known cures or treatments, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life. As a result, the proposed plans around the theme of ‘living with ME’ has been divided into sub-topics covering children and young people, social care, health, welfare, employment and quality of life.

To address the low capacity and capability of the research community to respond to ME/CFS research needs, low awareness of research needs, and a lack of funding of biomedical research on ME/CFS, six rapid actions are outlined in the plan. This includes UK Clinical Research Collaboration (UKCRC) working groups developing case studies of research, and raising awareness of both research funding and how to increase public involvement in research.

People with ME/CFS have also reported not feeling listened to by professionals, and the impact of ME/CFS on daily life not being understood or acknowledged.

To address this, proposed actions include; NHS England developing an e-learning module on ME/CFS to be available to all professional groups and the public, the Medical Schools Council promoting this to all UK medical schools, and encouraging medical schools to provide undergraduates with direct patient experience of ME/CFS.

For those living with ME/CFS, the aim is to improve awareness and understanding of the services that are available to people who need additional support, including carers.

Measures to enhance support include the Law Commission reviewing existing social care legislation relating to disabled children, and further discussions with stakeholders about health services and adaptations to support better access.

The consultation is open for eight weeks, closing at 11:59 on 4 October.

The delivery plan and consultation is available here.

Department of Health and Social Care
Will Quince MP