UK House of Lords/ House of Commons Questions

[Tao Fogger]

Bobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that referrals for ME/CFS are not rejected solely on the basis of a long covid diagnosis being mentioned in GP notes.

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

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

We published the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Final Delivery Plan on 22 July 2025. The plan focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

Within the ME/CFS Final Delivery Plan’s actions, NHS England will co-design resources, including a template specification for systems to improve services for mild and moderate ME/CFS. Additionally, the Department of Health and Social Care, with NHS England, will explore whether a specialised service should be prescribed by the Secretary of State for Health and Social Care for very severe ME/CFS.

The template specification for mild and moderate ME/CFS will be developed nationally through engagement with stakeholders, drawing on local expertise and models, and existing evidence.

In order to improve awareness and understanding of ME/CFS amongst healthcare professionals, the Department is working with NHS England to develop an e-learning programme on ME/CFS, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Commissioning of post-viral services is the responsibility of local integrated care boards (ICBs) and the output of the above engagement aims to support ICBs with their local commissioning decisions based on their local population needs.

 

[Tao Fogger]

Mary Glindon Labour, Newcastle upon Tyne East and Wallsend​

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure equitable (a) access to long covid services, (b) care outcomes and (c) patient experience for people with long covid.

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

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

Since April 2024, the commissioning of post-COVID, or long COVID, services have been the responsibility of local integrated care boards (ICBs), following the closure of the national post-COVID programme.

ICBs are responsible for commissioning specialist services for long COVID that meet the needs of their population, subject to local prioritisation and funding. In the commissioning of services, commissioners should take account of National Institute for Health and Care Excellence guidance, commissioning guidance, and other best practice.

NHS England has published commissioning guidance for post-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 guidance also sets out that a proportion of long COVID services funding should be allocated to tackling health inequalities. The commissioning guidance is available at the following link:

https://www.england.nhs.uk/long-rea...ervices-for-adults-children-and-young-people/

 

[Cinders66]

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.

.

Fair point, although she /or an official chose to send a letter to The MEA on May 12, that was a complete brush off to the community that re used the offensive phrase that “in worst cases people had felt unseen” or whatever.
I see the long Covid APPG have asked Ashley Dalton to attend as one of their next actions, so will be interesting to see how she responds *as a person* to direct challenges regarding services and research. I want to see her response to challenge of that standard line that is pasted, “it’s up to the ICB ‘s to fund in accordance with local priorities” and has to address that many ICBs are closing LC CLINICs because they are free to do so. As identified in a MQ question, equity is the issue when ICBs are free to not provide services for post-viral syndromes if they assess - for any reason - that their limited budget is best used elsewhere.

The ministers questions seem more targeted now and and the minister’s department is trying to bat them off with some lousy defences that hopefully won’t wash with MPs . Clearly there is no plans to invest anything in m.e research, provide any care for the wider severe ME community - it may even just be essentially app DIY management & critical care, all whilst farcically putting on a different hat for (except regarding services) long covid questions, reassuring them that there has been £57m invested, clinical trials Research etc ,.

The government could get away with treating m.e like *** when it was framed as a grey area by the medical profession & had some talking shop running , I think any government could find it a lot more hard to carry on skimping on us. We are getting even less state research funding now than when many people believed that a good portion of people could be significantly helped with a short course of behavior intervention, at a time when post-viral syndrome has Unprecedented
recognition and lost time shoud be being made up for . It feels like a dam has got to break.

 

[Trish]

Well said, @Cinders66

 

[Kiristar]

Bobby Dean Liberal Democrat, Carshalton and Wallington​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that referrals for ME/CFS are not rejected solely on the basis of a long covid diagnosis being mentioned in GP notes.

• Tweet Share
• Hansard source(Citation: HC Deb, 8 September 2025, cW)

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

We published the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Final Delivery Plan on 22 July 2025. The plan focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

Within the ME/CFS Final Delivery Plan’s actions, NHS England will co-design resources, including a template specification for systems to improve services for mild and moderate ME/CFS. Additionally, the Department of Health and Social Care, with NHS England, will explore whether a specialised service should be prescribed by the Secretary of State for Health and Social Care for very severe ME/CFS.

The template specification for mild and moderate ME/CFS will be developed nationally through engagement with stakeholders, drawing on local expertise and models, and existing evidence.

In order to improve awareness and understanding of ME/CFS amongst healthcare professionals, the Department is working with NHS England to develop an e-learning programme on ME/CFS, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Commissioning of post-viral services is the responsibility of local integrated care boards (ICBs) and the output of the above engagement aims to support ICBs with their local commissioning decisions based on their local population needs.

I don't understand why the direct question has not been asked "why is no health service being considered for the severe patients category in the Delivery plan?"

Why on earth has health care for that group of patients been omitted from the Delivery plan???!

It makes me livid every time I see this.

 

[Tao Fogger]

Mary Glindon Labour, Newcastle upon Tyne East and Wallsend​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 10 July 2025 to Question 62460 on Chronic Fatigue Syndrome: Health Services, whether a date has been set for the showcase event for post-acute infection conditions.

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• Hansard source(Citation: HC Deb, 10 September 2025, cW)

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

A provisional date of 6 November 2025 has been set for the showcase event for post-acute infection conditions. The event looks to encourage researchers to join the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and long COVID research field, to enable new collaborations across specialties and disciplines to stimulate further vital research.

 

[Tao Fogger]

Lizzi Collinge Labour, Morecambe and Lunesdale​

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential impact of the use of covid vaccines on levels of (a) hospitalisations and (b) disability caused by long covid.

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• Hansard source(Citation: HC Deb, 11 September 2025, cW)

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

The Government is committed to protecting those most vulnerable to COVID-19 through vaccination as guided by the independent Joint Committee on Vaccination and Immunisation (JCVI). The JCVI assessment indicates that the oldest age cohorts and individuals who are immunosuppressed are the two groups who continue to be at higher risk of serious disease.

To inform JCVI considerations, the last assessment of the impact of COVID-19 vaccines on hospitalisations was conducted by the UK Health Security Agency using data from the 2023 spring and autumn COVID-19 vaccination programmes. The next evaluation is planned to occur in the next few months.

Long term health consequences following COVID-19, including post-COVID syndromes such as long COVID, have been discussed at meetings of the JCVI. It remains uncertain whether getting extra COVID-19 vaccine doses has any effect on the chances of developing long COVID, how it progresses, or how it affects people.

 

[Tao Fogger]

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

To ask the Secretary of State for Science, Innovation and Technology, if he will hold discussions with the Secretary of State fo Health and Social Care on the potential merits of funding a research hub to (a) coordinate research and (b) support early-career researchers working on ME and Chronic Fatigue Syndrome.

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• Hansard source(Citation: HC Deb, 12 September 2025, cW)

Kanishka Narayan Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)​

UK Research and Innovation (UKRI) and the National Institute for Health and Care Research (NIHR) work closely together to coordinate research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Extensive support is provided to early-career researchers through the NIHR Academy and NIHR Infrastructure.

ME/CFS is a priority area for UKRI’s Medical Research Council (MRC) and it has committed over £4,460,000 to ME/CFS research since 2020. NIHR has also committed approximately £3.7 million to this area across the 2019/20-2023/24 financial years.

MRC recently awarded funding to PRIME, a £800,000 partnership to build new research infrastructure for ME/CFS research. PRIME will establish new research collaborations, bringing together researchers and private sector partners, to investigate the genetics, biomarkers and disease mechanisms of ME/CFS.

 

[rvallee]

UK Research and Innovation (UKRI) and the National Institute for Health and Care Research (NIHR) work closely together to coordinate research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

Hey if you're going to lie at least make it somewhat believable.

 

[Sasha]

ME/CFS is a priority area for UKRI’s Medical Research Council (MRC) and it has committed over £4,460,000 to ME/CFS research since 2020. NIHR has also committed approximately £3.7 million to this area across the 2019/20-2023/24 financial years.

MRC recently awarded funding to PRIME, a £800,000 partnership to build new research infrastructure for ME/CFS research. PRIME will establish new research collaborations, bringing together researchers and private sector partners, to investigate the genetics, biomarkers and disease mechanisms of ME/CFS.

I think these figures across five years show just what a priority area ME/CFS isn't.

 

[Cinders66]

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

To ask the Secretary of State for Science, Innovation and Technology, if he will hold discussions with the Secretary of State fo Health and Social Care on the potential merits of funding a research hub to (a) coordinate research and (b) support early-career researchers working on ME and Chronic Fatigue Syndrome.

• Tweet Share
• Hansard source(Citation: HC Deb, 12 September 2025, cW)

Kanishka Narayan Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)​

UK Research and Innovation (UKRI) and the National Institute for Health and Care Research (NIHR) work closely together to coordinate research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Extensive support is provided to early-career researchers through the NIHR Academy and NIHR Infrastructure.

ME/CFS is a priority area for UKRI’s Medical Research Council (MRC) and it has committed over £4,460,000 to ME/CFS research since 2020. NIHR has also committed approximately £3.7 million to this area across the 2019/20-2023/24 financial years.

MRC recently awarded funding to PRIME, a £800,000 partnership to build new research infrastructure for ME/CFS research. PRIME will establish new research collaborations, bringing together researchers and private sector partners, to investigate the genetics, biomarkers and disease mechanisms of ME/CFS.

Is that a yes or a no? Good questioning again. Peter white was pointing out that department was actually the home of the Medical research council. MPs should be given straight answers. If we all thought the trifling amounts to date + a showcase along the lines of CMRC conference+ long covid now, was enough, people wouldn’t have spent time putting the hub proposal together and be badgering about it.

 

[Cinders66]

I wish they’d ask on what grounds is it decided that dementia requires £160m / year to make progress towards treatments & ME/CFS requires around £1m. I note in the news dementia is on the verge of a blood test, so state investment of around £800m (a guess) over 15 -20 years has paid off.

“The ADAPT trial forms part of the Blood Biomarker Challenge, a multi-million-pound programme supported by Alzheimer’s Research UK, Alzheimer’s Society and players of the People’s Postcode Lottery. This groundbreaking initiative aims to revolutionise dementia diagnosis by bringing in blood tests into the NHS by 2029.“

“*It also shows how decades of sustained investment in research is finally going to lead to breakthroughs people with dementia so desperately need.”

“The study will evaluate whether a blood test measuring a protein called p-tau217 can help to diagnose Alzheimer’s disease earlier and more accurately than standard tests.”

“Research is critical but it is only one part of the puzzle. Unless the NHS and Government act now to speed up trials and approvals, innovations in dementia research risk being stuck in the lab instead of helping people.”

UK trial launches to transform Alzheimer’s diagnosis with simple blood test - Alzheimer's Research UK

A clinical trial using a blood test to help diagnose Alzheimer’s, is welcoming its first participants.

www.alzheimersresearchuk.org

 

[MeSci]

“*It also shows how decades of sustained investment in research is finally going to lead to breakthroughs people with dementia so desperately need.”

UK trial launches to transform Alzheimer’s diagnosis with simple blood test - Alzheimer's Research UK

A clinical trial using a blood test to help diagnose Alzheimer’s, is welcoming its first participants.

www.alzheimersresearchuk.org

I'm amazed that the research teams have so many crystal balls...

Having studied dementia for my Masters degree I am all too aware of the flaws in that research. Don't expect effective treatments for that in the near future.

 

[Cinders66]

I'm amazed that the research teams have so many crystal balls...

Having studied dementia for my Masters degree I am all too aware of the flaws in that research. Don't expect effective treatments for that in the near future.

Interesting
I have no science background. What a worthy use of your skills, & ofcourse sad if treatment is still far off for the many thousands affected.
I think at least they can say they have resources to push things through as fast as is possible. The blood test is less about diagnosis and early support Afaics and facilitating early intervention when drugs are found. The main thing that has helped that field seems targets and then allocated resources to stimulate the interest / activity deemed necessary to meet those targets. I don’t think theres Ever been anywhere anything similar for m.e. When I wrote to the Medical research council and asked about the disparity, the flat answer was we put up money/ resources because the government told us to.

I'm amazed that the research teams have so many crystal balls...

Having studied dementia for my Masters degree I am all too aware of the flaws in that research. Don't expect effective treatments for that in the near future.

No matter how long, and I understand group think and rigidity was a problem, I guess at least it can be said they really tried

 

[MeSci]

No matter how long, and I understand group think and rigidity was a problem, I guess at least it can be said they really tried

In fact possibly the main scientists stuck to researching something that was incorrect, using day-old chicks (!) for decades. I don't think they were really trying.

I'm afraid a lot of researchers just carry on whether their work is relevant or useful or not. It earns them a living.

Next time you see the words "on the verge of..." (relating to cures) or similar, think - how on earth could anyone know that they are about to find something out?

 

[Cinders66]

I don't understand why the direct question has not been asked "why is no health service being considered for the severe patients category in the Delivery plan?"

Why on earth has health care for that group of patients been omitted from the Delivery plan???!

It makes me livid every time I see this.

With the NICE guidelines definition & e module, they’ve blended severe and very severe now into a very low functioning / helpless category & so the NHS only focusing on the very severe is facilitated. The DHSC have said they're contemplating a service for the very severe,( 3 years was not enough time?) so maybe they’re going to set to something up with nurses for those bedbound? Or if it's just for critical care, a lot very severe m.e is not critical level so I wonder if even that is going to get served.


I have no idea of the discussions and proposals for the severely affected At the DHSC delivery plan committees. There was difference in emphasis in the charity proposals, so I think it was only the 25% group who were calling for physician services and off licensed MEDS in their submissions, moving to a medical care model for services.
severe ME has Been historically a low priority - there was no organised pushback against the discriminatory set up of the 2007 NHS clinics - so I guess they feel like they can get away with little /continued minimal responses now.

The repeated framing in the UK of severe ME being bed bound & helpless and referring to it Iike a handful of cases, In my view, is going to perpetuate the minimisation and failure to serve the severe spectrum, which has historically been understood to be 25% of community. That 25% figure was derived from including those both house and bed bound, which to people with sketchy insight both mean “bad” but for people who have lived experience, or care giving experience, they're miles apart.

I saw you post elsewhere that you were upper severe. Does the definition of bedbound - nhs e module - or “unable to do anything except for yourself except wash face” - NICE - seem appropriate to you ?

 

[Kiristar]

With the NICE guidelines definition & e module, they’ve blended severe and very severe now into a very low functioning / helpless category & so the NHS only focusing on the very severe is facilitated. The DHSC have said they're contemplating a service for the very severe,( 3 years was not enough time?) so maybe they’re going to set to something up with nurses for those bedbound? Or if it's just for critical care, a lot very severe m.e is not critical level so I wonder if even that is going to get served.


I have no idea of the discussions and proposals for the severely affected At the DHSC delivery plan committees. There was difference in emphasis in the charity proposals, so I think it was only the 25% group who were calling for physician services and off licensed MEDS in their submissions, moving to a medical care model for services.
severe ME has Been historically a low priority - there was no organised pushback against the discriminatory set up of the 2007 NHS clinics - so I guess they feel like they can get away with little /continued minimal responses now.

The repeated framing in the UK of severe ME being bed bound & helpless and referring to it Iike a handful of cases, In my view, is going to perpetuate the minimisation and failure to serve the severe spectrum, which has historically been understood to be 25% of community. That 25% figure was derived from including those both house and bed bound, which to people with sketchy insight both mean “bad” but for people who have lived experience, or care giving experience, they're miles apart.

I saw you post elsewhere that you were upper severe. Does the definition of bedbound - nhs e module - or “unable to do anything except for yourself except wash face” - NICE - seem appropriate to you ?

I remember challenging (as did others) the emodule definitions not matching NICE at the time but I don't remember the full nice description being that restrictive, I thought it's severe was essentially housebound?

"Severe ME/CFS
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound."


I'd say I'm upper part of severe grade under this. Essentially housebound, but sofa bound and in the home I am ambulatory, not bedbound. NiCE fits in that I can only get dressed - if you define that as minimal, but not bathe. Teeth brushing is down to once a day. Leaving the house for a med appointment, which I do in a wheelchair, destroys me for weeks into months. And a few in a row along with a couple of E&R emergencies seem to have left me with a permanent further deterioration.

I didn't look at the category below though.

The DP goes from talking about mild and moderate pathway to its "very severe" proposal, so there's an obvious gap.

The latter is just around providing nutritional support if I understand rightly.

The proposals look set to leave me, and other severe but not very severe people with no option for care, which has completely destroyed my hope and trust in the process.

Eta below is the NICE very severe category, which specifies bedbound and care dependant.

"Very severe ME/CFS
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed."

 

[Cinders66]

If you are right that the very severe care side was to cover eating difficulty alone , They are framing m.e care as fatigue management and feeding tubes, status quo tweaked and this in my view is not right.