UK House of Lords/ House of Commons Questions

Ellie Chowns Green, North Herefordshire
To ask the Secretary of State for Work and Pensions, pursuant to the Answer of 6 May 2025 to Question 49218 on Social Security Benefits: Medical Examinations, whether her Department plans to (a) make an assessment of the potential merits of exploring more tailored mechanisms to reduce the frequency of assessments for people with (i) Myalgic Encephalomyelitis and (ii) other clearly documented, severe and long-term health conditions where improvement is unlikely and (b) involve (A) people with lived experience and (B) relevant charities in the (1) development and (2) implementation of such mechanisms.

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• Hansard source(Citation: HC Deb, 19 May 2025, cW)

Stephen Timms The Minister of State, Department for Work and Pensions[/paste:font]
As stated in our response to Question 49218, we are not planning to exempt specific conditions, but we are planning to reduce reassessments for those with the most severe conditions.

We aim to do this in Universal Credit through guaranteeing that for both new and existing claims, those with the most severe, life-long health conditions, who will never be able to work, will not need to be reassessed in the future. In PIP, we are exploring ways we could use evidence from other services to reduce the need for some people with very severe conditions to undergo a full functional assessment.

In the Green Paper, we also promised to review the PIP assessment to make sure that it is fit for the future. I shall lead the review in close consultation with disabled people, disabled people’s organisations, and other experts. To get this right, I am bringing together stakeholders to agree the scope and timing of the review. I will then publish Terms of Reference for the review in due course.

 

Adam Dance Liberal Democrat, Yeovil
To ask the Secretary of State for Health and Social Care, what steps he is taking to help improve support for people with Myalgic Encephalomyelitis in Yeovil constituency.

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• Hansard source(Citation: HC Deb, 21 May 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
NHS England is responsible for allocating funding to integrated care boards (ICBs), including the Somerset ICB which covers the Yeovil constituency, and ICBs are in turn responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services to meet the needs of their population, subject to local prioritisation and funding.

The process of commissioning services should take into account best practice guidance such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021. The NICE’s guidelines provide recommendations on the principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach involving access to a range of health and social care professionals based on needs.

At a national level, we aim to publish the ME/CFS final delivery plan by the end of June 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of the people with this debilitating disease. The responses to the interim delivery plan consultation, along with continued close engagement with the Government, the National Health Service, and external stakeholders, will inform the development of the final ME/CFS delivery plan.

 

Lord Strasburger Liberal Democrat
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 10 March (HL5426), which of the research studies relating to long Covid are still running; and how much they are planning to spend in this financial year to treat or cure the symptoms of long Covid.

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• Hansard source(Citation: HL Deb, 23 May 2025, cW)

Lord Strasburger Liberal Democrat
To ask His Majesty's Government what assessment they have made of progress made by UK-based researchers on finding methods to treat the symptoms of long Covid and to cure patients suffering from long Covid.

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• Hansard source(Citation: HL Deb, 23 May 2025, cW)

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
The National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI) have dedicated funding to research into treatment options, clinical trials, and to understanding the underlying mechanisms of long COVID. The overall Government investment in long COVID research is over £57 million. Government research funders welcome applications for funding for long COVID research.

Of the research studies identified in the answer for HL5426, four are ongoing and have expected spend in this financial year, namely: STIMULATE-ICP; PHOSP-COVID; Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue; and Online cognitive training for people with cognitive impairment following SARS-CoV-2 infection. The total budget for these studies is over £15 million, but spend in this financial year is not yet confirmed, as it depends on the progress of the studies.

No specific assessment has been made of the progress of United Kingdom-based researchers on finding methods to treat the symptoms of long COVID. The UK has a strong track record of developing and evaluating new treatments for COVID-19 through randomised control trials. In November 2020, the NIHR and UKRI launched their first call for research proposals on long COVID and subsequently funded the treatments for long COVID. In 2021, the NIHR funded the STIMULATE-ICP study as the largest trial for long COVID treatments at the time. This study is still ongoing, and emerging findings will be shared with the National Institute for Health and Care Excellence. The NIHR Innovation Observatory has undertaken a rapid horizon scan to identify repurposed medicines in clinical development for the treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome, as well as related conditions such as long COVID and fibromyalgia. The horizon scan focused on medicines with a UK licence that are in phase two or three clinical trials, with trial registration dates from 2020 onwards.

Unfortunately, no study globally has identified a cure for long COVID. The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial, which combined exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.

 

Good questions. I'd love to see a direct question challenging why such different research paths & resources for long covid and ME/CFS

 

Sigh, is REGAIN long covid’s PACE? Millions always seems available for psychologising studies with questionable methodology. But for biomedical proposals the standards seem to be different.

‘The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial,’

 

Well, that sure would explain a lot. Who spends money without caring whether it achieves anything? Those people, clearly. Also: the entire industry, clearly.

If you're not measuring, you're not doing science. Hell, even in business they measure everything they do. Sometimes to a fault, but still. Because, really, who spends money without even looking into what it achieves? People who don't intent do achieve anything, that's who.

"No need to check Dr Lysenko's work. The politburo has full confidence in the methods of Dr Lysenko."