UK House of Lords/ House of Commons Questions

Photo of Bobby DeanBobby 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.

Photo of Ashley DaltonAshley 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.
 

Photo of Mary GlindonMary 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.

Photo of Ashley DaltonAshley 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/
 
Trish said:
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.
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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.
 
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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 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.

Photo of Ashley DaltonAshley 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.
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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.
 

Photo of Mary GlindonMary 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.

Photo of Ashley DaltonAshley 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.
 

Photo of Lizzi CollingeLizzi 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.

Photo of Ashley DaltonAshley 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.
 

Photo of Jo PlattJo 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.

Photo of Kanishka NarayanKanishka 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.
 
Tao Fogger said:
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.
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I think these figures across five years show just what a priority area ME/CFS isn't.
 
Tao Fogger said:

Photo of Jo PlattJo 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.

Photo of Kanishka NarayanKanishka 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.
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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.
 
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.”



www.alzheimersresearchuk.org

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 www.alzheimersresearchuk.org
 
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