UK House of Lords/ House of Commons Questions

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

The Department funds research through the National Institute for Health and Care Research (NIHR). Between the 2019/20 and 2023/24 financial years the NIHR committed approximately £3.7 million to research projects and programmes on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The NIHR, alongside other Government research funders, remains committed to funding high-quality research to understand the causes, consequences, and treatment for ME/CFS.

Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve the evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including ME/CFS and long COVID, later this year to stimulate further research in this field.

The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection conditions such as ME/CFS, and research funding is available. 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. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded. Establishing a research hub for ME/CFS would not provide the same level of flexibility. The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
 
This is specific to NIHR. However, Is there a certain code for these questions?
Could they be asked to quantify the amounts given to research into dementia, Parkinson’s and ME/CFS over the past 5 years, (presumably around £540m, £75m & about £6m): & explain how the small gestures made in the DHSC delivery plan can possibly be considered enough to rapidly ramp up research funded & interest in an incredibly disabling illness, unfairly stigmatised and neglected for years?
 
Even if it was 3.7 million (which I doubt I looked before I can't find evidence of anything past the known 3 projects of a bit over 2 million) that is still less than £2 a sufferer per year. Its pretty dreadful funding rate, not something to be proudly proclaiming compared to what is spent on other diseases.
 
BrightCandle said:
Even if it was 3.7 million (which I doubt I looked before I can't find evidence of anything past the known 3 projects of a bit over 2 million) that is still less than £2 a sufferer per year. Its pretty dreadful funding rate, not something to be proudly proclaiming compared to what is spent on other diseases.
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It's when the figures are put alongside others that they scream out ridiculous, which is why I'd like to see a minister having to do that and still carry on with the "we are doing our job & duty to advcance research properly & fairly, as your government and holders of the purse for medical funding", attitude. Edit. You can’t agree that to find treatments in a reasonable Time frame for the admittedly more costly dementia, there needs to be £160m / year and then turn to the m.e community and pretend that £1m is really good vs condemning people to a life in bed.
 
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Photo of Bobby DeanBobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, what research is being commissioned by the NHS into potential treatments for long covid.

Photo of Ashley DaltonAshley 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). Between 2019/20 and 2023/24, the NIHR and the Medical Research Council (MRC), part of UK Research and Innovation, have jointly invested over £57 million into long COVID research with the aim of improving diagnosis and our understanding of the underlying mechanisms of the disease, as well as evaluating the effectiveness of pharmacological and non-pharmacological therapies and interventions, and clinical care.

The NIHR has awarded funding to a number of projects and programmes investigating treatments for long COVID. These have included clinical trials to test and compare different treatments such as antihistamines, anticoagulants and anti-inflammatory medicines. The Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN (REGAIN) trial, funded by NIHR, provided the first high-quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for long COVID. The NIHR has also provided £1.1 million in funding towards the Listen trial, which found that participants who received the Listen self-management tool intervention had greater capacity for daily activities, improved mental health, reduced fatigue impact and increased self-efficacy. However, there is more work to be done to find the most promising treatments and interventions, and we are actively exploring next steps for long COVID research.

Together with MRC, we have created a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including long COVID. We are also planning a showcase event, hosted by NIHR and MRC, for the research of post-acute infection conditions, including myalgic encephalomyelitis/chronic fatigue syndrome and long COVID, later this year to stimulate further research in this field.
 

Photo of Bobby DeanBobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the adequacy of the guidance it has issued to healthcare professionals on how to (a) identity different clinical subtypes of long covid and (b) provide appropriate treatment pathways for those diagnosed.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

While no specific assessment has been made, there is targeted advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance such as that published and updated by the National Institute for Health and Care Excellence (NICE). This is available at the following link: https://www.nice.org.uk/guidance/NG188

NICE is responsible for keeping its published guidelines up to date and under active surveillance to ensure that they reflect developments in the evidence base and its recommendations on new medicines.

Integrated care boards (ICBs) are responsible for commissioning specialist services that meet the needs of their population, subject to local prioritisation and funding. In the commissioning of services, commissioners should take account of NICE guidance and other best practice.

NHS England has published commissioning guidance for post-COVID (long COVID) services, which sets out the commissioning, service requirements and oversight of post-COVID services by ICBs in England for adults and children and young people. It outlines the elements that post-COVID services should include and the principles of care for long COVID. The commissioning guidance is available at the following link: https://www.england.nhs.uk/long-rea...ervices-for-adults-children-and-young-people/.
 

Photo of Bobby DeanBobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, if his Department will take steps to establish a national database of long covid patients.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

Aggregated historical data remains accessible via the long COVID dashboard on the NHS National Data Platform (Foundry). This dashboard continues to support commissioners and service providers by enabling the monitoring of service activity, evaluation of equity in access and healthcare utilisation, and benchmarking of performance across services.
 

Photo of Bobby DeanBobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, whether he plans to (a) reinstate and (b) establish dedicated long covid support services in St Helier and Epsom.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

The St George’s, Epsom and St Helier NHS Foundation Trust’s chronic fatigue service had a waiting list of 350 patients waiting 25 weeks or more for their first appointment. To manage this, the trust temporarily paused new referrals from June. During the temporary pause, the service will continue to care for existing patients. Any new patients who were referred before the pause will still be offered an appointment within 25 weeks.

The St George’s, Epsom and St Helier NHS Foundation Trust continues to keep this under review. Patients needing help should still visit their general practice if they are experiencing long COVID symptoms.
 

Photo of Cameron ThomasCameron Thomas Liberal Democrat, Tewkesbury​

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing funding for new (a) services and (b) research to support people with (i) myalgic encephalomyelitis and (ii) chronic fatigue syndrome.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

NHS England is responsible for allocating funding to integrated care boards, which in turn are responsible for commissioning specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) services that meet the needs of their population, subject to local prioritisation and funding.

On 22 July 2025, we published the final ME/CFS delivery plan, which is available at the following link:

https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan

Within the plan there is an action for the Department and NHS England to explore whether a specialised service should be prescribed for very severe ME/CFS.

The Government funds research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC). We have assessed the ME/CFS research portfolio funded through NIHR and MRC and acknowledge that this is an under-funded area. The level of funding awarded is directly related to the number and quality of applications received and we have historically received a small number of applications for funding in this area. Between 2019/20 and 2023/24, the NIHR committed approximately £3.7 million to research projects and programmes on ME/CFS. In the same period, the MRC committed approximately £2.9 million to research into ME/CFS.

Together with the MRC, we are actively exploring next steps for research in ME/CFS. In the final delivery plan for ME/CFS, we have outlined the research actions and additional support that we will offer to the research community to increase the volume and quality of applications. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS.
 
Tao Fogger said:
The Rehabilitation Exercise and psycholoGical support After COVID-19 InfectioN (REGAIN) trial, funded by NIHR, provided the first high-quality evidence confirming the sustained clinical benefit and lack of harm with rehabilitation programmes for long COVID.
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Yet again this factually inaccurate claim.

I wrote to the APPG on Long Covid asking if they could point out to her that this is factually inaccurate and that a correction to that effect has been made in the BMJ. Didn't get an acknowledgement let alone a reply.

I wondered about contacting #ThereforME as it might be the kind of thing they could draw some attention to, but I can't find a contact address for them.
 
Tao Fogger said:

Photo of Bobby DeanBobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, whether he plans to (a) reinstate and (b) establish dedicated long covid support services in St Helier and Epsom.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

The St George’s, Epsom and St Helier NHS Foundation Trust’s chronic fatigue service had a waiting list of 350 patients waiting 25 weeks or more for their first appointment. To manage this, the trust temporarily paused new referrals from June. During the temporary pause, the service will continue to care for existing patients. Any new patients who were referred before the pause will still be offered an appointment within 25 weeks.

The St George’s, Epsom and St Helier NHS Foundation Trust continues to keep this under review. Patients needing help should still visit their general practice if they are experiencing long COVID symptoms.
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What a great way to manage excessive waiting lists (NOT).
 
MeSci said:
What a great way to manage excessive waiting lists (NOT).
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This happened in my area regarding ME/CFS. The clinic was only funded for a part-time post to cover 4 counties. Not surprisingly it either had 1 year+ waiting lists or shut to new people completely. It is basically why I am bedbound. The specialist dr was actually good but I never got to see him (until I became bedbound)& had GPs advising push through/ psychological & was too young /naive to know not to trust the NHS.
 
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Tao Fogger said:

Photo of Bobby DeanBobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the adequacy of the guidance it has issued to healthcare professionals on how to (a) identity different clinical subtypes of long covid and (b) provide appropriate treatment pathways for those diagnosed.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

While no specific assessment has been made, there is targeted advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance such as that published and updated by the National Institute for Health and Care Excellence (NICE). This is available at the following link: https://www.nice.org.uk/guidance/NG188

NICE is responsible for keeping its published guidelines up to date and under active surveillance to ensure that they reflect developments in the evidence base and its recommendations on new medicines.

Integrated care boards (ICBs) are responsible for commissioning specialist services that meet the needs of their population, subject to local prioritisation and funding. In the commissioning of services, commissioners should take account of NICE guidance and other best practice.

NHS England has published commissioning guidance for post-COVID (long COVID) services, which sets out the commissioning, service requirements and oversight of post-COVID services by ICBs in England for adults and children and young people. It outlines the elements that post-COVID services should include and the principles of care for long COVID. The commissioning guidance is available at the following link: https://www.england.nhs.uk/long-rea...ervices-for-adults-children-and-young-people/.
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The commissioning guidance for long covid afaiu is physician-led services and one stop shops to cover all medical needs. I think that long covid services also have an oversight committee. Imagine that for ME/CFS - a Dr for m.e & OI /POTS & therapist support all covered in one medical clinic & oversight to ensure national coverage/ good standards. It’s impossible for ME/CFS apparently,
 
Tao Fogger said:

Photo of Cameron ThomasCameron Thomas Liberal Democrat, Tewkesbury​

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing funding for new (a) services and (b) research to support people with (i) myalgic encephalomyelitis and (ii) chronic fatigue syndrome.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

NHS England is responsible for allocating funding to integrated care boards, which in turn are responsible for commissioning specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) services that meet the needs of their population, subject to local prioritisation and funding.

On 22 July 2025, we published the final ME/CFS delivery plan, which is available at the following link:

https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan

Within the plan there is an action for the Department and NHS England to explore whether a specialised service should be prescribed for very severe ME/CFS.

The Government funds research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC). We have assessed the ME/CFS research portfolio funded through NIHR and MRC and acknowledge that this is an under-funded area. The level of funding awarded is directly related to the number and quality of applications received and we have historically received a small number of applications for funding in this area. Between 2019/20 and 2023/24, the NIHR committed approximately £3.7 million to research projects and programmes on ME/CFS. In the same period, the MRC committed approximately £2.9 million to research into ME/CFS.

Together with the MRC, we are actively exploring next steps for research in ME/CFS. In the final delivery plan for ME/CFS, we have outlined the research actions and additional support that we will offer to the research community to increase the volume and quality of applications. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS.
Click to expand...
NHS England is responsible for allocating funding to integrated care boards, which in turn are responsible for commissioning specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) services that meet the needs of their population, subject to local prioritisation and funding

The last line of that is one helluva loophole isn’t it
 
MeSci said:
What a great way to manage excessive waiting lists (NOT).
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Waiting lists are not necessarily meaningful. I remember back in the 1990s I was encouraged to put patients on waiting lists as there was potentially funding to bring waiting lists down, then government policy change and waiting lists were seen as a bad thing so the waiting lists were quietly disappeared and patients were recorded as unmet need.
 
I doubt the Minister even sees a lot of the replies to written parliamentary questions, let alone choose the wording. I agree the responses are useless, bit they are probably written by junior civil servants, or these days even by AI.
My MP recently boasted in a letter to constituents that he had asked thousands of questions in his first year, it would be impossible for ministers to answer or even read most of these written questions and answers.
 

Photo of Jo PlattJo Platt Labour/Co-operative, Leigh and Atherton​

To ask the Secretary of State for Health and Social Care, how much funding his Department plans to allocate for research on ME and Chronic Fatigue Syndrome in the next (a) year and (b) five years.

Photo of Jo PlattJo Platt Labour/Co-operative, Leigh and Atherton​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) encourage research on and (b) support the development of (i) strategic partnerships and (ii) research infrastructure for ME and Chronic Fatigue Syndrome.

Photo of Ashley DaltonAshley Dalton The Parliamentary Under-Secretary for Health and Social Care​

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection condition such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), for which research funding is available. 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, rather than designating an amount of funding for a particular condition. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.

The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and to attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.

Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including for ME/CFS and long COVID, later this year to stimulate further research in this field.
 
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