After a Long Delay, ME/CFS Strategy Finally Arrives

The Department of Health and Social Care has published its long-delayed delivery plan to improve care and support for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 

The plan was welcomed by Action for ME as “an important step towards recognising the scale and seriousness of the condition,” but the charity warned it “simply does not go far enough.”

ME/CFS affects around 390,000 people in the UK. Symptoms include debilitating fatigue, sleep problems, and difficulties with thinking, concentration, and memory. Around one in four people diagnosed with the condition report being housebound or unable to work.

Focus on Three Priority Areas

The cross-government plan was developed in consultation with the NHS and external stakeholders. It focuses on three priorities:

• Research
• Attitudes and education
• Living with ME/CFS

A consultation on the interim plan, launched in July 2023, revealed widespread dissatisfaction with how people with ME/CFS are treated. Respondents reported difficulties accessing specialist services, negative attitudes from professionals, and challenges relating to education, welfare, and employment, including benefits. 

Delays Sparked Criticism

In February this year, Liberal Democrat health spokesperson Helen Morgan told The Times the plan represented an “opportunity to move away from this legacy of neglect towards a transformation of care and research.” 

However, she noted that it had taken 33 months and five health secretaries to get to this point. 

When the final plan was still unpublished last month, Morgan described the further delay as “inexcusable.” 

People with ME and their carers had been “left behind for decades,” she said. “They have faced inadequate care, scant research funding, no treatments, and little hope of a better future.”

Government Acknowledges Patient Concerns

In the plan’s foreword, Minister for Public Health and Prevention Ashley Dalton acknowledged the inconsistency of care and the feeling among some patients that their condition had not been appropriately recognised by the health and care system. 

“I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems,” she said.

In a separate letter to members of the ME/CFS Task and Finish Group on the day of the final plan’s launch, Dalton acknowledged: “People living with ME/CFS often face stigma and misunderstanding,” which she attributed to “a lack of awareness and education about the condition.” 

The final plan includes a commitment to introduce new training for NHS healthcare professionals “as a priority” to address stigma and improve professional understanding.

Access to Services and Employment Support 

The government said that ME/CFS patients would benefit from closer-to-home care under neighbourhood health services, as outlined in its 10-year health plan.

It also promised support through reforms to benefit assessment processes and employment initiatives for people with long-term conditions and disabilities.

However, Action for ME said these proposals lacked detail and failed to show how they would bring about “meaningful change.”

Research Funding Still Limited

The plan includes increased funding for ME/CFS research via the National Institute for Health and Care Research and the Medical Research Council. 

This includes exploring the repurposing of existing medicines for ME/CFS.

However, Action for ME warned that competitive grant processes were “unlikely to reverse the long history of underfunding of ME research.” Other conditions, such as dementia, mental health, and rare diseases benefit from dedicated platforms with sustained, multi-million-pound funding, it said. 

Calls for Strategic Commitment

Action for ME also criticised the government for ignoring its calls for strategic research funding and a dedicated ME research hub.

Chief Executive Sonya Chowdhury said the plan was an “important step for the ME community, long overlooked and under-served.” However, she added “the plan must not be a token gesture — it requires a sustained, strategic commitment to care, funding, and research.”

In her foreword, Dalton said future funding would depend on what is “practically feasible and financially viable and affordable, especially within the challenging current fiscal climate.” 

Dr Sheena Meredith is an established medical writer, editor, and consultant in healthcare communications, with extensive experience writing for medical professionals and the general public. She is qualified in medicine and in law and medical ethics.