ME care reforms promised after woman’s tragic death
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.
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”.
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.
Source: The Independent, 22 July 2025
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