New healthcare plan for people living with chronic fatigue syndrome

A new government consultation has been launched to help improve the lives of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and how care and support can be practically improved.

The plan has been developed in close collaboration with people living with the condition, carers and family members, and healthcare and support professionals. It will inform the development of a final cross-government delivery plan on ME/CFS.

The consultation asks for views on specific chapters and actions on:

• research
• attitudes and education
• living with ME/CFS
• language used in relation to ME/CFS.

It will look 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.

NHS England also plan to develop an e-learning module on ME/CFS to boost awareness, which will be available to all professional groups and UK medical schools.

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.

In addition, the plan includes 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.

What is myalgic encephalomyelitis/chronic fatigue syndrome?

ME/CFS is a long-term health condition which remains poorly understood, despite affecting an estimated 241,000 children and adults in England.

It is a complex, multisystem, chronic medical condition. It is not clear what causes ME/CFS. In many cases, symptoms are thought to have been triggered by infection, but it is not simple post-illness fatigue – it lasts longer and even minimal mental or physical activity can make symptoms worse. An estimated 25% of people with the condition have severe or very severe symptoms.

There are currently no known cures or treatments, but patients can be supported to manage their symptoms and maximise their quality of life.

The proposed plans centre around the theme of ‘living with ME’ and it has been divided into sub-topics covering children and young people, social care, health, welfare, employment and quality of life.

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.”

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