The government has pledged to overhaul care for hundreds of thousands of people living with chronic fatigue syndrome, acknowledging that many “struggle” to access appropriate support.
The Department of Health and Social Care (DHSC) stated its intention to publish a new plan, asserting it is “committed to changing attitudes and transforming care” for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
The pledge comes in the wake of Maeve Boothby-O’Neill’s death at just 27.
She had suffered with ME for a decade before dying at her home in Exeter in October 2021 from severe malnutrition.
Her inquest revealed she had been admitted to the Royal Devon and Exeter Hospital three times in the year of her death for malnutrition treatment.
The 10-day hearing detailed her final months, during which she was confined to bed, unable to chew food, and struggled to drink due to being unable to sit up.
Miss Boothby-O’Neill, the daughter of Sean O’Neill, a journalist with The Times newspaper, had been suffering from fatigue since the age of 13, which got worse after she completed her A-levels.
Deborah Archer, now an area coroner for Devon, Plymouth and Torbay, concluded Miss Boothby-O’Neill had died from natural causes “because of severe myalgic encephalomyelitis (ME)”.
Last year she wrote to the Government to highlight a lack of specialist beds, “extremely limited” training for doctors and lack of available funding for research and treatment of the condition.
On Tuesday, the Government said that it has created a plan which “outlines clear steps to improve care for patients, by investing in research and offering access to care in the community”.
The Department of Health and Social Care (DHSC) acknowledged that many people with the condition “currently struggle to access appropriate care tailored to their complex condition”.
The plan, which is expected to be published on Tuesday, will include new training for NHS workers, DHSC said.
And the document will also include funding for research, the DHSC said.
Public health minister Ashley Dalton, said: “ME/CFS is a debilitating illness that can severely limit patients’ ability to participate in everyday activities, maintain employment, or enjoy family and social life.
“Today’s plan will help tackle the stigma and lack of awareness of this condition through improved training for NHS staff.
“And through our neighbourhood health services, we will ensure patients suffering from the effects of ME/CFS can access quality care, closer to home, as pledged in our 10-Year Health Plan.
But Action for ME said that the plan “does not go far enough”.
Sonya Chowdhury, chief executive of the charity, said: “We appreciate the time DHSC has put into the delivery plan and their engagement with us and the ME community throughout.
“However, the plan simply does not go far enough. We are at the stage now where we need more than rhetoric, we need to take a strategic approach if we want a different outcome. What is proposed in the plan will not offer this.
“We must have a funded, dedicated research hub to leverage our world-leading life sciences sector to unlock treatments and ultimately cures for ME.
“Without a commitment to better co-ordinate research, people with ME will continue to be neglected, overlooked and, for many, confined to their homes.
“ME charities have been calling for this funding to be accelerated for years and we are still not seeing a strategic approach to address this historic shortfall. Once again, it feels like people with ME have been ignored.”
