The Times: The ME Delivery Plan will not include any extra government funding.

[Countrygirl]

https://archive.ph/2025.02.18-21541...a-funding-lgcf8df6p#selection-1461.0-1627.176

THE TIMES

Plan to help ME sufferers will not include extra funding

Charities and MPs ‘incredibly disappointed’ at government’s decision, which they say will make it harder to support patients and find new treatments
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Eleanor Hayward

, Health Editor

Tuesday February 18 2025, 9.30pm GMT, The Times

Photo of Karen Hargrave and her husband James.

Karen Hargrave, a campaigner, with her husband, James, who has ME

Ministers are refusing to provide extra funding to improve NHS care for people with myalgic encephalomyelitis (ME), threatening to undermine a long-delayed plan for the condition.
A plan to overhaul care for patients with ME is due to be published next month, but the government revealed on Monday that it won’t be backed with extra cash for new services and research.
In a statement to parliament, Ashley Dalton, minister for public health, said: “There are currently no plans to allocate additional funding towards the myalgic encephalomyelitis/chronic fatigue final delivery plan.”
Charities and MPs said they were “incredibly disappointed” and that without extra funding efforts to improve the lives of people with ME would fail and it would be hard to unlock new treatments.
ME, also known as chronic fatigue syndrome, is believed to affect hundreds of thousands of people in the UK and can be fatal, with some patients bedbound and unable to eat.
Inadequate NHS care was highlighted last year at the inquest of Maeve Boothby O’Neill, 27, who died in October 2021 of malnutrition as a result of ME.

• My daughter died of ME. I had to fight the NHS for answers

Following the inquest, the coroner issued a prevention of future deaths report highlighting “non-existent” specialist care and a lack of funding for ME research, warning that there would be further deaths unless the government and NHS took action..................................

 

[Countrygirl]

This was in yesterday's The Times:

Plan to help ME sufferers has been delayed for too long​

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Ministers must show that care and research for these neglected patients is a priority​

Helen Morgan

Tuesday February 18 2025, 9.00pm GMT, The Times
It has taken 33 months and five health secretaries for the government to get into a position to launch its long-anticipated cross-government delivery plan for chronic fatigue syndrome.
The plan was announced in May 2022 by Sajid Javid and aims to boost research, improve attitudes and better the lives of people with myalgic encephalopathy (ME), as it is also known. It is due to be published in March but has faced a setback with the minister responsible, Andrew Gwynne, sacked for a series of unacceptable WhatsApp messages.

People with ME are now looking to Ashley Dalton, Gwynne’s replacement, to provide much-needed reassurance that the plan will be a ministerial priority.
• Inside the Labour WhatsApp group that got two MPs suspended
They are among the most underserved patient communities in the UK. The sickest lie in darkened rooms, sometimes unable to move, speak or even swallow. Those living with the most extreme forms of ME describe it as not a life but a bare existence.

The numbers affected have skyrocketed after the pandemic but healthcare provision remains dire. In 2023, 28 per cent of NHS trusts and integrated care boards in England were implementing the 2021 National Institute for Health and Care Excellence guidelines for ME. A public consultation highlighted failures in healthcare, including “inappropriate attitudes and a lack of compassion”.
A prevention of future deaths report, following the inquest into the death of Maeve Boothby-O’Neill, described care for the most severely affected as “nonexistent”. Research funding is negligible. Over the past 12 years, the government has invested just £8 million in ME research. While the UK has committed strategic funding to dementia, motor neurone disease and mental health conditions, similar funding for ME has been considered an impossibility.
• Severely ill patient with ME begs for home feeding

The new delivery plan represents an opportunity to move away from this legacy of neglect towards a transformation of care and research. However, it needs ambition, clear targets and resources to make a meaningful difference. A well-resourced plan should be seen not as a sunk cost but an investment in 1.3 million patients and their carers.

Recent questions from Liberal Democrat colleagues revealed that the departments for health and work and pensions do not have an up-to-date estimate of the impact of ME on the economy. In 2014-15, it was put at £3.3 billion. With one in two people with long Covid meeting the criteria for ME, and ten years of inflation, this figure will be far higher.
Thousands of patients in dark rooms are looking to the government to prove it is on their side.
Helen Morgan is Liberal Democrat MP for North Shropshire

 

[linusbert]

such a disgrace.
we had a few years ago a demonstration in germany by cfs sufferers, even the parliament did talk about it. announcing big plans. in the end not much happend, they somewhat gave 900.000 EUR spread over 3 years (300k /year) for this cause. later on they gave away 15 million for research to contract data until 2026.

Summary by AI:

In November 2020, the Bundestag’s Budget Committee approved the 900,000 euros (about 300,000 euros annually over three years, 2021–2023) to expand research and care structures for ME/CFS, as announced by the Deutsche Gesellschaft für ME/CFS. This was a federal initiative driven by the Grand Coalition (CDU/CSU and SPD) to address the long-standing neglect of the condition. The funds weren’t tied to a single project but aimed at broadly improving infrastructure—think research coordination, pilot studies, or healthcare enhancements.
From what’s traceable, a chunk of this likely supported groundwork for later, larger efforts. For instance, posts on X from 2020 and patient advocacy updates suggest it helped kickstart organizational efforts, like strengthening networks between research institutions and patient groups. The Deutsche Gesellschaft für ME/CFS and similar organizations pushed for this to lay the foundation for bigger funding—like the 15 million euros announced by the Federal Ministry of Education and Research (BMBF) in 2023 for ME/CFS pathomechanism research starting in 2024. That later funding built on earlier momentum, hinting the 900,000 euros may have seeded preparatory work, such as feasibility studies or data collection.

The 15 million euros (announced 2023) is a BMBF grant funding 21 research projects from 2024–2026 to study ME/CFS pathomechanisms (e.g., biomarkers, disease triggers). As of February 19, 2025, it’s being rolled out to consortia like Charité Berlin and TU Munich, with about 5 million euros spent annually. Projects are active, producing early data, and will wrap up by 2026.

there is a awareness of this disease in politics, but somehow not much happens. lets see what they come up with until next year. but i got the feeling that we actually got a lot of biomarkers and theories of potential triggers for like decades now.