Third delay to ME care plan prompts backlash from patients
Health ministers have delayed a plan for the future treatment of the debilitating condition myalgic encephalomyelitis (ME) for the third time in nine months.
Work on the ME Delivery Plan — which the government claims will boost research, advance medical education and improve patients' lives — began more than three years ago under the Conservative health secretary, Sajid Javid.
Labour ministers have repeatedly pledged to publish the plan and have yet to explain why it has been delayed.
Last October the public health minister at the time, Andrew Gwynne, said the government planned to publish 'in the winter of 2024/25'. In December, responding to the inquest into the death of the ME patient, Maeve Boothby O'Neill, 27, the minister told a coroner 'we aim to publish by the end of March'.
On June 5, Gwynne's successor, Ashley Dalton, said it was 'a priority for the department to publish the final ME delivery plan by the end of June 2025'.
On Saturday, however, a health department spokesperson would only say the plan would be published 'shortly'.
ME, also known as chronic fatigue syndrome (CFS) affects at least 400,000 people in England and Wales. Many people with long Covid experience similar symptoms.
The illness is characterised by extreme fatigue, disturbed sleep that does not bring rest and a flare-up of symptoms after even mild exertion (known as post exertional malaise). It is usually triggered by a viral infection and there is no proven cure or treatment. About 25 per cent of sufferers become severely ill with many housebound or bedbound. In a small number of cases patients die.
The Times understands the ME initiative has been put on the back burner because the health secretary, Wes Streeting, is determined that nothing should distract from the promotion of his ten-year plan for the NHS.
In a further blow to the hopes of ME patients, Streeting has also ruled out any new money for the delivery plan and rejected appeals for a ring-fenced fund to advance ME research. The plea for a specific funding resource was made in a letter signed by all 72 Liberal Democrat MPs. But the health secretary has written back saying ring fencing ME funding 'goes against our commitment to open competition to ensure transparency and scientific excellence'.
His statement appears to contradict previous government awards such as the £50 million five-year commitment made in 2021 to finance research into Motor Neurone Disease while last year the National Institute for Health and Care Research (NIHR) called for proposals to address 'evidence gaps in liver disease research'.
The NIHR is also running an 'open call' for a five-year research consortium to prevent cardiovascular disease. ME campaigners had lobbied for a similar scheme to build a research network and are surprised by Streeting's response.
Helen Morgan, the Liberal Democrat health spokesperson, said people with ME and their carers had been left behind for decades.
'They have faced inadequate care, scant research funding, no treatments and little hope of a better future,' she said. 'Further delay to the Delivery Plan for ME is inexcusable. People with ME are right to feel that improving this situation is not a priority for this government. The government must think again, publish the plan without delay and allocate it the resources it needs to make a real difference.'
• Severely ill patient with ME begs for home feeding
Sonya Chowdhury, of the charity Action for ME, said she was 'deeply dismayed' by another delay to the delivery plan: 'Just weeks ago, the minister gave a public commitment that the plan would be published by the end of June. This is now the third delay in nine months, and the government's language around publication has become increasingly vague.
'The ME community is once again left in the dark — with no clear timeline, no explanation, and growing doubt over whether the plan will appear at all. What message does this send to a group already fighting for basic recognition, where the most severely affected are so often the most neglected?'
A Department of Health and Social Care spokesperson said: 'Our thoughts are with all those whose lives have been touched by myalgic encephalomyelitis/chronic fatigue syndrome. We are committed to improving the care and support for all those affected and will publish a final delivery plan shortly.'
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