UK House of Lords/ House of Commons Questions

it has been the brazen 2 tier efforts for m.e compared to long covid - ie don’t you worry, ofcourse we are taking long covid seriously and as proof of this ww point to the fact we have invested this much… for This program including clinical trials etc that has, to put it mildly taken the biscuit. .

 

Ben Maguire Liberal Democrat Shadow Attorney General
To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of taking additional steps to improve the quality of life of people living with Myalgic Encephalomyelitis.

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• Hansard source(Citation: HC Deb, 24 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
We are committed to improving care and support for people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.

We aim to publish the final ME/CFS delivery plan by the end of June 2025, where one of the key themes is bettering the lives of those living with this debilitating disease, as well as boosting research, and improving attitudes and education.

The responses to the interim delivery plan consultation, along with continued close engagement with the Government, National Health Service and external stakeholders, will inform the development of the final ME/CFS delivery plan, which will include actions to improve quality of life.

 

Munira Wilson Liberal Democrat Spokesperson (Education, Children and Families)
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people impacted by long covid in Twickenham constituency.

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• Hansard source(Citation: HC Deb, 28 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
Commissioning, service provision and staffing of long COVID services is the responsibility of local integrated care boards.

General practitioners (GPs) continue to act as the primary point of contact to ensure patients receive the appropriate advice and care. Patients experiencing symptoms of long COVID are advised to seek support from their GP in the usual way.

A directory of public health, community, and voluntary sector resources has been developed and is available to local GPs and primary care partners. This directory enables healthcare professionals to signpost patients to a wide range of local support services that address the various impacts of long COVID. Further information on the support services available in the Twickenham constituency is available at the following link:

https://www.kingstonandrichmond.nhs.uk/patients-and-families/patient-leaflets/long-covid-information

At a national level, NHS England has also published commissioning guidance for post-COVID services, which sets out the principles of care for people with long COVID.

Between 2019/20 and 2023/24, through the National Institute for Health and Care Research and Medical Research Council, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.

 

Ben Maguire Liberal Democrat Shadow Attorney General
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of funding research into the (a) causes of and (b) potential cures for Myalgic Encephalomyelitis.

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• Hansard source(Citation: HC Deb, 28 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
As indicated in the interim delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the Government is keen to increase and improve research in this area. ME/CFS can have a devastating effect on the lives of those who suffer from it, and those close to them, and research can hold the key to improving the quality of life for people with ME/CFS.

The Government funds ME/CFS research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC). Funding is available and we welcome funding applications for research into ME/CFS. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality.

In areas, like ME/CFS, which are underserved by research, we work with other relevant funders to develop strategic solutions. For example, the MRC and NIHR co-funded the DecodeME project. The NIHR, Scottish Chief Scientist’s Office, and the MRC also funded the James Lind Alliance PSP for ME/CFS, facilitated by the charity Action for ME. We will outline further research actions as part of the Final Delivery Plan.

 

At least they've stopped using that line about how 'at worst', ME/CFS can make people 'feel' they aren't getting proper care. Perhaps someone's explained how insulting it was.

 

I told him roughly what it is like, at least once, as he's my local MP.

https://www.s4me.info/threads/uk-al...me-news-2020-onward.16996/page-17#post-604847

 

Lord Bethell Conservative
To ask His Majesty's Government what are the process and criteria for triggering an economic impact assessment of a new disease in the Treasury; and whether they are undertaking an assessment of the suitability of that process and criteria against long Covid, as a condition that did not exist five years ago.

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• Hansard source(Citation: HL Deb, 29 April 2025, cW)

Lord Livermore The Financial Secretary to the Treasury
HM Treasury has a comprehensive framework for assessing and managing potential risks to the economic and fiscal outlook, including those posed by new diseases. This framework involves systematic monitoring through internal risk monitors, risk governance forums, and collaboration with other government departments such as the Cabinet Office and the Department of Health and Social Care (DHSC). In escalatory scenarios, such as where a new disease with high transmission rates emerges, HM Treasury is prepared to conduct economic impact assessments to inform policy and response plans.

During the COVID-19 pandemic, HM Treasury officials engaged with other Government departments to consider the implications of long COVID, including assisting with preparations for the DHSC long COVID Oversight Board. HM Treasury will provide more information on its efforts to understand the economic implications of long COVID-19 to the ongoing COVID-19 inquiry.

 

Ruth Cadbury Chair, Transport Committee, Chair, Transport Committee
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve access to treatments for long covid.

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• Hansard source(Citation: HC Deb, 30 April 2025, cW)

Ruth Cadbury Chair, Transport Committee, Chair, Transport Committee
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of clinical research into treatments for long covid.

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• Hansard source(Citation: HC Deb, 30 April 2025, cW)

Liz Jarvis Liberal Democrat, Eastleigh
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support parents caring for children with long covid; and whether his Department plans to develop a long-term strategy to fund (a) biomedical research and (b) treatment for long covid in (i) adults and (ii) children.

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• Hansard source(Citation: HC Deb, 30 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
The Government is committed to ensuring that families have the support that they need. The Care Act 2014 requires local authorities to deliver a wide range of sustainable, high-quality care and support services, including support for carers, which can include parents.

Across the National Health Service in England, there are services supporting people with post-COVID syndrome, often described as long COVID. These services offer physical, cognitive, and psychological assessment, and, where appropriate, refer patients onto existing services for treatment and rehabilitation. Further information can be found via the NHS website, at the following link:

https://www.england.nhs.uk/coronavirus/post-covid-syndrome-long-covid/

The National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) remain committed to funding high-quality research to understand the causes, consequences, and treatment for long COVID. We are actively exploring next steps for research in this area.

Between 2019/20 and 2023/24, through the NIHR and MRC, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.

This includes funded clinical trials to test and compare different treatments such as antihistamines, anticoagulants, and anti-inflammatory medicines, as well as trials such as the approximately £1.5 million REGAIN trial funded through the NIHR. REGAIN is 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 with rehabilitation programmes for long COVID which combine exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.

The approximately £1.9 million CLoCk study, co-funded by the NIHR and the MRC, developed an agreed definition of long COVID in children and young people as well as the associated symptoms, which will help harmonise research and improve understanding of the condition.

Funding is available and we welcome funding applications for research into long COVID in both adults and children. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

To support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to develop a new Clinical Post-COVID Society to facilitate the ongoing sharing of best practice and to support people affected by long COVID. Further information about the society can be found at the following link:

https://www.clinicalpcs.org.uk

 

They are describing a total fiction, like Marie Antoinette being paraded around in fake villages. The clinics are terrible. The research funding is over, and it was terribly mismanaged. They keep framing it as "aim to" but not only the studies are all done, they achieved nothing at all. Everything they describe here is a mirage, an illusion, a delusion, even.

 

Ellie Chowns Green, North Herefordshire
To ask the Secretary of State for Work and Pensions, with reference to the Green Paper entitled Pathways to Work: Reforming Benefits and Support to Get Britain Working, published on 18 March 2025, if she will make an assessment of the potential impact of the four-point minimum eligibility threshold on the ability of people with (a) fluctuating illnesses and (b) Myalgic Encephalomyelitis to claim PIP.

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• Hansard source(Citation: HC Deb, 8 May 2025, cW)

Stephen Timms The Minister of State, Department for Work and Pensions
Information on the impacts of the Pathways to Work Green Paper will be published in due course, and some information was published alongside the Spring Statement. These publications can be found in ‘Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper’(opens in a new tab).

A further programme of analysis to support development of the proposals in the Green Paper will be developed and undertaken in the coming months.

 

Edward Morello Liberal Democrat, West Dorset
To ask the Secretary of State for Health and Social Care, how much funding his Department has provided for research on the long-term effects of covid-19 on lung health.

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• Hansard source(Citation: HC Deb, 9 May 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC), which is part of UK Research and Innovation, remain committed to funding high-quality research to understand the causes, consequences, and treatment for the long-term effects of COVID-19. The NIHR committed £15.06 million to the following three research projects related to the long-term effects of COVID-19 on lung health, between financial years 2020/21 and 2024/25:

• Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services;
• HypErpolarised Xenon Magnetic Resonance PuLmonary Imaging in PAtIeNts with Long-COVID (EXPLAIN); and
• HElping Alleviate the Longer-term consequences of COVID-19 (HEAL-COVID): A national platform trial.

Between 2019/20 and 2023/24, Government research funders invested several hundred million pounds to understand SARS-COV-2 and the COVID-19 illness. As COVID-19 is a predominantly respiratory condition, much of this research is relevant to understanding the long-term effects of COVID-19 on lung health. On long COVID specifically, through the NIHR and the MRC, we have invested over £57 million on research studies. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.

Funding is available and we welcome funding applications for research into any aspect of human health and care, including on long COVID and lung health. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

 

Suella Braverman Conservative, Fareham and Waterlooville
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the adequacy of levels of support for people with myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 13 May 2025, cW)

Suella Braverman Conservative, Fareham and Waterlooville
To ask the Secretary of State for Health and Social Care, whether his Department plans to increase support for people with myalgic encephalomyelitis who are employed.

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• Hansard source(Citation: HC Deb, 13 May 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
Occupational health as advisory support has a broad remit. It plays an important role in supporting employers to maintain and promote employee health and wellbeing through assessments of fitness for work, advice about reasonable adjustments, work ability or return to work plans, and signposting to treatment for specific conditions such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).

Access to Work is a demand-led, personalised discretionary grant that supports the recruitment and retention of disabled people in sustainable paid employment. The tailored nature of the scheme allows customers to receive the appropriate grant and support based on their specific health and disability-related needs, including ME/CFS. Access to Work grants do not replace an employer’s duty under the Equality Act 2010 to make reasonable adjustments.

The goal is to open up opportunities to good work and to support a healthier, more productive and inclusive nation, by helping more disabled people and people with health conditions like ME/CFS to get appropriate work, get on in that work, and to return to work as quickly as possible if they leave it. This supports the Government’s priority of tackling economic inactivity, as set out in the Get Britain Working White Paper.

NHS England recently completed a ME/CFS stocktake, aimed at providing a nationwide overview of service delivery in commissioning and contracting, assessing access, activity, and outcomes. The findings confirmed the widely recognised challenges of significant variation in care delivery across England and a lack of comprehensive activity data.

We aim to publish our 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 people with this debilitating disease. The responses to the interim delivery plan consultation, along with continued close engagement with other parts of the Government, the National Health Service, and external stakeholders, will inform the development of the final ME/CFS delivery plan.

 

Richard Burgon Labour, Leeds East
To ask the Secretary of State for Work and Pensions, what assessment her Department has made of the potential impact of her proposed changes to Personal Independence Payment on people with (a) Myalgic Encephalomyelitis and (b) other fluctuating illnesses.

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• Hansard source(Citation: HC Deb, 14 May 2025, cW)

Stephen Timms The Minister of State, Department for Work and Pensions
In January 2025, there were around 25,000 working age claimants in England and Wales that have their main disability recorded as Myalgic Encephalomyelitis, excluding those treated under Special Rules for End of Life. Around 12,000 received less than 4 points across all daily living descriptors. The primary health conditions recorded on the PIP computer system are not classified according to whether they are fluctuating or not, therefore information can only be given for specified conditions.

The Personal Independence Payment (PIP) assessment looks at how a long-term health condition or disability impacts on daily life across 12 activities, taking into account fluctuations over a 12-month period. The activities are grouped into two components, daily living and mobility, and within each activity a descriptor must be chosen to score an individual depending on whether an individual can complete the activity, the manner in which they do it, and whether they can complete each activity safely, to an acceptable standard, repeatedly and in a reasonable time period.

The assessment is designed to reflect the impact of variations in an individual's needs for all health conditions, not only those which more typically fluctuate. Health conditions may be physical, sensory, mental, intellectual or cognitive, or any combination of these, and the assessment is designed to take a comprehensive approach to disability, reflecting the needs arising from the full range of impairments.

Health professionals are expected to be mindful of the fact that many conditions fluctuate, producing symptoms that vary in intensity from mild to severe, and are instructed not to base their opinion solely on the situation as observed at the assessment. Health Professionals also have access to Condition Insight Reports (CIRs)/EBM Protocols which are developed specifically to enable them to gain further insight into clinical and functional information, relating to specific conditions.

 

Edward Morello Liberal Democrat, West Dorset
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential impact of research on the long-term effects of covid-19 on his Department's public health strategies.

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• Hansard source(Citation: HC Deb, 14 May 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
In October 2024, the Department hosted a roundtable on long COVID research with the Chief Scientific Officer, Professor Lucy Chappell, discussing the relevance of the research to other post-viral syndromes and strategies to stimulate further research in the scientific community.

The Department regularly reviews evidence on the health and economic impact of diseases and conditions. Where appropriate, this evidence is used to produce impact assessments which inform the development of new policies to address the needs of the population.

The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC), which is part of UK Research and Innovation, remain committed to funding high-quality research to understand the causes, consequences, and treatment for long COVID.

Between 2019/20 and 2023/24, through the NIHR and the MRC, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate the effectiveness of clinical care.

 

Jonathan Davies Labour, Mid Derbyshire
To ask the Secretary of State for Work and Pensions, what steps her Department is taking to support people with long covid into work.

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• Hansard source(Citation: HC Deb, 14 May 2025, cW)

Alison McGovern The Minister of State, Department for Work and Pensions
Our ambitions are to reverse the trend of inactivity, and to raise both productivity and living standards whilst improving the quality of work. To help achieve this, we have set a long-term ambition to achieve an 80% employment rate, demonstrating our commitment to bringing those furthest away from the labour market into it, increasing local labour supply. Backed by £240million investment, the Get Britain Working White Paper launched last November will drive forward approaches to tackling economic inactivity and work toward the 80% employment rate.

Appropriate work is generally good for health and wellbeing, so we want everyone to get work and get on in work, whoever they are and wherever they live. Disabled people and people with health conditions are a diverse group so access to the right work and health support, in the right place, at the right time, is key.

The Government is committed to supporting disabled people and people with health conditions, including people with long covid, and have range of support available so individuals can stay in work and get back into work, including those that join up employment and health systems. Measures include joining up health and employment support around the individual through Employment Advisors in NHS Talking Therapies, Individual Placement and Support in Primary Care and WorkWell, as well as support from Work Coaches and Disability Employment Advisers in Jobcentres and Access to Work grants.

The Government also announced in the recent Pathways to Work Green Paper that we would establish a new guarantee of support for all disabled people and people with health conditions claiming out of work benefits who want help to get into or return to work, backed up by £1billion of new funding.

Employers play an important role in addressing health and disability. The Disability Confident Scheme encourages employers to create disability inclusive workplaces and to support disabled people to get work and get on in work. To build on this, the Joint DWP and DHSC Work & Health Directorate is facilitating “Keep Britain Working”, an independent review of the role of UK employers in reducing health-related inactivity and to promote healthy and inclusive workplaces. The lead reviewer, Sir Charlie Mayfield, is expected to bring forward recommendations in Autumn 2025.

 

David Taylor Labour, Hemel Hempstead
To ask the Secretary of State for Health and Social Care, when he plans to publish his Department's final delivery plan on myalgic encephalomyelitis.

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

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
We aim to publish our myalgic encephalomyelitis, also known as chronic fatigue syndrome (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 other parts of the Government, the National Health Service, and external stakeholders, will inform the development of the final ME/CFS delivery plan.

 

Andrew Gwynne Independent, Gorton and Denton
To ask the Secretary of State for Health and Social Care, whether the myalgic encephalomyelitis/chronic fatigue delivery plan will include (a) advice and (b) provisions for (i) long covid, (ii) fibromyalgia and (iii) other conditions that cause fatigue.

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

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
We are committed to improving care and support for people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.

As such, the ME/CFS final delivery plan focuses on ME/CFS only, and will not cover advice or the provision of services for related conditions, although some of the content may be applicable or relevant to other conditions that cause fatigue.