UK House of Lords/ House of Commons - relevant people and questions

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, what proportion of people diagnosed with Myalgic Encephalomyelitis who applied for NHS Continuing Healthcare funding were (a) assessed as eligible following a Decision Support Tool assessment and (b) refused following a Decision Support Tool assessment in each of the last five years.

Photo of Stephen KinnockStephen Kinnock Minister of State (Department of Health and Social Care)​

NHS England does not collect data on the proportion of people diagnosed with myalgic encephalomyelitis who are found eligible for NHS Continuing Healthcare (CHC), or any other condition. Eligibility for CHC is not determined by diagnosis or condition, but is assessed on a case-by-case basis taking into account the totality of an individual’s needs, and whether they constitute a ‘primary health need’.

Operational delivery of CHC is the responsibility of integrated care boards (ICBs), including conducting CHC assessments using the standardised Decision Support Tool. NHS England holds ICBs to account, including through robust assurance mechanisms, to ensure they are delivering their statutory functions.
 
NHS England does not collect data on ... myalgic encephalomyelitis
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This would be the accurate statement. It doesn't concern itself with ME/CFS at all. So far in all these questions asked attempting to quantify any important stats about ME diagnosis and treatment in the NHS they have managed to show they have not collected any. How it is they are ensuring the statuatory functions are being met given they don't do anything I have no idea, and neither do they.
 

Photo of Sureena BrackenridgeSureena Brackenridge Labour, Wolverhampton North East​

To ask the Secretary of State for Health and Social Care, for what reason the action relating to a specialised service for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was included in the Final Delivery Plan without full consideration of system constraints affecting its implementation.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.
 

Photo of Sureena BrackenridgeSureena Brackenridge Labour, Wolverhampton North East​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure integrated care boards are accountable for commissioning effective services for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome until the nationally commissioned specialised service is introduced.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

[There seems to be a theme here ;) As above, I will try to remember to come back and post a reply to this when there is one]
 

Photo of Ben LakeBen Lake Plaid Cymru, Ceredigion Preseli​

To ask the Secretary of State for Health and Social Care, what assessment he has made of progress made by UK-based researchers funded by his Department on finding methods to treat the symptoms of long Covid.

Photo of Ben LakeBen Lake Plaid Cymru, Ceredigion Preseli​

To ask the Secretary of State for Health and Social Care, how much public funding is allocated to support UK-based research into methods to treat and cure long Covid.

Photo of Zubir AhmedZubir Ahmed 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 2020/2021 and 2024/25, the NIHR invested nearly £51 million into Long Covid research, including research into treatments. As well as funding research itself, the Department invests significantly in research expertise and capacity, specialist facilities, support services, and collaborations to support and deliver research in England, known as NIHR infrastructure.

While there has been no formal assessment of the progress of United Kingdom based research into Long Covid, it is clear that NIHR-funded research has delivered important findings. The REGAIN trial 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 funded research to test and compare different treatments such as antihistamines, anticoagulants, and anti-inflammatory medicines through the STIMULATE-ICP trial. The NIHR has also provided £1.1 million in funding towards the LISTEN trial, which found that the 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 we are actively exploring next steps for long COVID research. This includes a development award focussed on evaluating repurposed and new interventions for post-acute infection syndromes and associated conditions, including long COVID. Two projects have recently been awarded funding.
 
UK government said:
While there has been no formal assessment of the progress of United Kingdom based research into Long Covid, it is clear that NIHR-funded research has delivered important findings
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So they keep saying, and yet there is no actual evidence of that, and in fact this is completely false. Every bit of research published this year and all clinical programs are stuck in time 3+ decades ago, absolutely nothing was actually achieved or even learned.
The REGAIN trial 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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And this is a blatant lie. It's widely known that there are no treatments, but they keep lying because there are no consequences, and in fact it's encouraged. What's worse is that those are straight up political lies, but most medical professionals would agree with that, though mainly because they don't care either anyway. Biased government is backed by biased systems where the opinions of biased people dominate.

It's the lack of consequences, of accountability, but more than anything it's all the damn bias. Bias is the only thing that matters. Positive bias can achieve outcomes, negative bias can't. All the bias here is negative, hence nothing was actually achieved, while they pretend because of all the negative bias.

Only bias seems to matter, frankly, unless a machine can replace biased humans in the loop. It's what provides the motivation, and there obviously isn't any here. Everything is stuck in time, and it might as well be the 15th century here.
 

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into myalgic encephalomyelitis.

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

UK Research and Innovation’s (UKRI) Medical Research Council (MRC) has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020.

MRC is working with the Department of Health and Social Care (DHSC) and the National Institute for Health and Care Research (NIHR) to deliver on agreed actions from the ME/CFS Final Delivery Plan. This includes funding strategic initiatives to increase research capacity and hosting engagement events to bring together research funders, commercial and academic researchers and patient representatives.

In November 2025, DHSC, NIHR and UKRI, co-hosted a research showcase to discuss and explore the ongoing research in the fields of ME/CFS and long COVID. MRC continues to liaise with the ME/CFS research community to support future applicants.
 

Photo of Jim ShannonJim Shannon DUP, Strangford​

To ask the Secretary of State for Health and Social Care, what measures are in place to support those recovering from long-term COVID-related condition.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

The Government is aware that post-acute infection conditions, such as Long Covid, can have a devastating effect on those who suffer from them. We are committed to taking a comprehensive and compassionate approach to supporting individuals with post-acute infection conditions such as Long Covid, recognising the unique challenges these conditions present.

NHS England has invested significantly in supporting people with Long Covid. This includes setting up specialist post- Covid, or Long Covid, services nationwide for adults, and children and young people, and investing in ensuring general practice teams are equipped to support people affected by the condition.

Since April 2024, in line with the National Health Service operating framework and the establishment of integrated care systems, commissioning of post-COVID services has been the responsibility of local integrated care boards to meet the needs of their population, subject to local prioritisation and funding.

Where referral into a Long Covid service is not possible, for example because a service has closed or is due to close, general practitioners can refer patients into other appropriate existing NHS pathways, depending on their clinical needs.

To support clinical leadership in this area, NHS England worked in partnership with the British Society of Physical and Rehabilitation Medicine to establish the International Post Covid and Post Infection Conditions Society to facilitate the ongoing sharing of best practice to support people affected by Long Covid.
 
[The following was asked as a Topical Question in the House of Commons rather than being submitted as a Written Question.]

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

Happy St George’s day, Mr Speaker. The covid-19 inquiry exposed how long covid was repeatedly dismissed, despite its lasting impact on nearly 2 million people, including me. Can the Minister reassure those living with long covid that the Government will fully act on the inquiry’s findings and explain what steps are being taken to ensure that long covid and post-viral illnesses shape future resilience and pandemic planning?

Photo of Nick Thomas-SymondsNick Thomas-Symonds The Paymaster General and Minister for the Cabinet Office​

My hon. Friend talks powerfully about the impact of long covid, and it has had that impact on many people following the pandemic. The most recent module 3 report from the covid inquiry covered this issue in detail. Of course, the Government will carefully consider the inquiry’s work on this in our full response—it absolutely should.
 

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

To ask the Secretary of State for Health and Social Care, what discussions his Department has had since the publication of the Final Delivery Plan for ME/CFS regarding the commissioning of a specialised service for people with very severe ME/CFS.

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

To ask the Secretary of State for Health and Social Care, if the Department can outline how many NHS outpatient services for ME/CFS are currently operational in England, and how many of these accept referrals for patients with severe or very severe ME/CFS.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

Our ME/CFS Final Delivery Plan, published in July 2025, includes an action for the Department of Health and Social Care and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The third and final session in NHS England’s ME/CFS e-learning series, Managing Severe ME/CFS, is now live on the NHS Learning Hub. This session provides practical, evidence-based guidance to support people living with severe and very severe ME/CFS, and has universal access. There is also an additional version of this module, which is only available to healthcare professionals, and includes clinical guidance on severe and very severe ME/CFS.

NHS England has already started its work on co-designing resources, including a ‘template service specification’ for mild/moderate ME/CFS services, to support systems to improve services for mild and moderate ME/CFS. NHS England and the Department of Health and Social Care have met with a group of key stakeholders to move this work on. This template will now include reference to severe ME/CFS.
 

Photo of Lee DillonLee Dillon Liberal Democrat, Newbury​

To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with myalgic encephalomyelitis.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

As part of the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), that was published in July 2025, the Government committed to supporting people with ME/CFS. The plan focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

We are developing a template service specification for mild and moderate ME/CFS, in conjunction with NHS England. The template will set out examples of best practice for the commissioning of services for ME/CFS to ensure consistent and high-quality care across integrated care boards. The Department, together with ForwardME, is developing a Language Matters Guide to accompany this to ensure that terminology is consistent and well understood.

To help support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme for healthcare professionals. All sessions of the e-learning programme, with sessions one, two, and three having universal access, whilst the final session on managing severe ME/CFS being only available to healthcare professionals, are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288.
 
They just completely dodged the question about how many ME/CFS services exist and how many accept severe and very severe patients, didn't even bother with the quantified answer at all. It wasn't asking if there was plans it was asking what exists and does it currently support severe patients. I really hate they can just skip these questions like this, its really clear none of this exists but they don't have to go along with it they could say the NHS must do better.
 
Tao Fogger said:

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

To ask the Secretary of State for Health and Social Care, what discussions his Department has had since the publication of the Final Delivery Plan for ME/CFS regarding the commissioning of a specialised service for people with very severe ME/CFS.

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

To ask the Secretary of State for Health and Social Care, if the Department can outline how many NHS outpatient services for ME/CFS are currently operational in England, and how many of these accept referrals for patients with severe or very severe ME/CFS.

Photo of Sharon HodgsonSharon Hodgson The Parliamentary Under-Secretary for Health and Social Care​

Our ME/CFS Final Delivery Plan, published in July 2025, includes an action for the Department of Health and Social Care and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The third and final session in NHS England’s ME/CFS e-learning series, Managing Severe ME/CFS, is now live on the NHS Learning Hub. This session provides practical, evidence-based guidance to support people living with severe and very severe ME/CFS, and has universal access. There is also an additional version of this module, which is only available to healthcare professionals, and includes clinical guidance on severe and very severe ME/CFS.

NHS England has already started its work on co-designing resources, including a ‘template service specification’ for mild/moderate ME/CFS services, to support systems to improve services for mild and moderate ME/CFS. NHS England and the Department of Health and Social Care have met with a group of key stakeholders to move this work on. This template will now include reference to severe ME/CFS.
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Expectations being managed downward.
 

Photo of Lee DillonLee Dillon Liberal Democrat, Newbury​

To ask the Secretary of State for Health and Social Care, what funding his Department is providing for research into the genetic differences between people with myalgic encephalomyelitis and those without the condition.

Photo of Zubir AhmedZubir Ahmed The Parliamentary Under-Secretary for Health and Social Care​

The National Institute for Health and Care Research and the Medical Research Council have dedicated £3.2 million to the DecodeME study. This study aims to understand the genetic differences between those who have myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and those who do not, and in doing so increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments. Preliminary findings from DecodeME indicate genetic differences in eight areas linked to the immune and nervous systems in people with ME/CFS. This discovery of specific genetic signals may help us understand the biological pathways involved in ME/CFS in the future.
 
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