UK House of Lords/ House of Commons Questions

As part of the Welfare Reforms debate yesterday (30the June 2025), one MP raised the following point:

Photo of Calum MillerCalum Miller Liberal Democrat Spokesperson (Foreign Affairs)​

I recently met a support group in my constituency of those who suffer from ME, chronic fatigue syndrome or long covid. Their description of the devastating impact of those variable conditions was very affecting. If one of those people were to have an improvement in their condition, meaning that they were no longer eligible for PIP, and then to represent for assessment, would they be entitled to return to the PIP level they were on previously, or would they be treated as new applicants under the terms the Secretary of State has described today?

Photo of Liz KendallLiz Kendall The Secretary of State for Work and Pensions​

The hon. Gentleman raises an important point, which is precisely what we want to look at in the PIP review, because it does not take into account fluctuating conditions. That is an important issue moving forward, and we will be absolutely determined to involve him, his constituents, and organisations that represent those with fluctuating conditions in the process of the review.

The full debate can be seen here: https://www.theyworkforyou.com/debates/?id=2025-06-30a.23.0
 

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of NHS services for people with myalgic encephalomyelitis.

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, what support his Department provides to GPs to help improve the (a) early recognition and (b) management of ME in (i) Wiltshire and (ii) areas in Wiltshire with limited specialist services.

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

Earlier this year, NHS England completed a long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), stocktake to provide a national overview of service delivery in commissioning and contracting, assessing access, activity, and outcomes. The findings confirmed widely recognised challenges, as well as significant variation in care delivery across England, and a lack of comprehensive activity data.

The Department is working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, including general practitioners in Wiltshire, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The third session is currently being finalised and will be launched later in 2025.

The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.

We are developing a final delivery plan for ME/CFS, which we aim to publish in due course. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease in Wiltshire and throughout England.
 
Tao Fogger said:
The Department is working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, including general practitioners in Wiltshire, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The third session is currently being finalised and will be launched later in 2025.

The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.

We are developing a final delivery plan for ME/CFS, which we aim to publish in due course. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease in Wiltshire and throughout England.
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This only seems to be available to people logged in to Learning Hub or OpenAthens.
 
With all the pip news i may have missed it. But any news on

DHSC delivery plan on ME/CFS​

April 10, 2025 MPs were told end of June according to the MEA news page for 10 April. I Maybe cynical and it does not state in what year.
 
Tao Fogger said:

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of NHS services for people with myalgic encephalomyelitis.

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, what support his Department provides to GPs to help improve the (a) early recognition and (b) management of ME in (i) Wiltshire and (ii) areas in Wiltshire with limited specialist services.

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

Earlier this year, NHS England completed a long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), stocktake to provide a national overview of service delivery in commissioning and contracting, assessing access, activity, and outcomes. The findings confirmed widely recognised challenges, as well as significant variation in care delivery across England, and a lack of comprehensive activity data.

The Department is working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, including general practitioners in Wiltshire, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The third session is currently being finalised and will be launched later in 2025.

The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.

We are developing a final delivery plan for ME/CFS, which we aim to publish in due course. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease in Wiltshire and throughout England.
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The elephant in the room is that the CMO report of 2002 & Gibson report 2006 made recommendations regarding education and so on ,so the fact that gvt, nhs & medical schools has finally bothered to take M.e seriously and act to ensure that those providing medical care & research in the UK respond to m.e from an informed and careful position 20 years later, after neglect, harm and suffering is not something to expect applause for & should be done with an apology and reparations for the harm done . Failures and harms that would seen be acceptable in any other organisation or business, are being brushed over because it is government & the medical profession, who both see themselves as above accountability.
 
Whilst I'm constantly negative about the responses from Ashley Dalton, She’s posted on Twitter regarding the Ass dying debate she has mastitic cancer. This is obviously a very sad thing for her and a v tough thing to go through. I think from our perspective it’s a negative because there is this a VIEW you’ve got a condition where people “can” get better, and who knows what recovery stats she's been presented with because the NHS have used the 30% stat & therefore m.e is nothing serious like cancer. I don’t share that because Losing all your adult life in bed & maybe getting some treatment age 60 versus getting cancer at 50 , I know which one I would rather have. But it might explain why she’s not shown herself to be an ally or particularly sympathetic so far. And Wes streeting is another cancer survivor who always talks about cancer and dementia on Twitter and Covid but never talks about long Covid or other chronic conditions. I do think there’s this unfortunate mindset& we have not been effective in making the public imagine how they would like to live your whole life in lockdown?. I was heartened by how the lib Democrats were using ME cases in the pip debate, talking about it seriously as a devastating thing to happen to an adult and m.e is not normally talked about in those terms.
 

Photo of Luke MyerLuke Myer Labour, Middlesbrough South and East Cleveland​

To ask the Secretary of State for Health and Social Care, what his Department's planned timetable is for the publication of its forthcoming delivery plan on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

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

The myalgic encephalomyelitis, also known as chronic fatigue syndrome, final delivery plan will be published shortly. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 

Photo of John MilneJohn Milne Liberal Democrat, Horsham​

To ask the Secretary of State for Health and Social Care, when he plans to publish the Delivery Plan for ME/CFS.

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

The myalgic encephalomyelitis, also known as chronic fatigue syndrome, final delivery plan will be published shortly. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 

Photo of Monica HardingMonica Harding Liberal Democrat Spokesperson (International Development)​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 5 June 2025 to Question 55860 on Chronic Fatigue Syndrome: Health Services, whether he has a new target date for publication of that plan.

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

The myalgic encephalomyelitis, also known as chronic fatigue syndrome, final delivery plan will be published shortly. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, whether the delivery plan for ME/CFS will include a strategic framework to support research into treatment development.

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of (a) UK Research and Innovation and (b) National Institute for Health and Care Research funding for biomedical research into (i) myalgic encephalomyelitis and (ii) chronic fatigue syndrome.

Photo of Sarah GibsonSarah Gibson Liberal Democrat Spokesperson (Business)​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to monitor progress on the delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.

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

The Government funds research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC).

We have assessed the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), research portfolio funded through the NIHR and the 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. 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.

We aim to publish the final delivery plan for ME/CFS shortly. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating condition. Following the publication of the final delivery plan, we will monitor the progress across all actions in the delivery plan, with project management arrangements in place to ensure timely implementation and periodical reports to stakeholders as appropriate.

Together with the MRC, we are actively exploring next steps for research in ME/CFS, and we will outline in the delivery plan further research actions and the additional support 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. This funding opportunity is a key component of our response to the need for further research-based evidence related to 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, including ME/CFS and long COVID, research later this year to stimulate further research in this field.
 

Photo of Llinos MediLlinos Medi Plaid Cymru, Ynys Môn​

To ask the Secretary of State for Health and Social Care, if he will provide an update on the publication of the final cross-government delivery plan for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

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

The myalgic encephalomyelitis, also known as chronic fatigue syndrome, final delivery plan will be published shortly. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
 

Photo of Pippa HeylingsPippa Heylings Liberal Democrat Spokesperson (Energy Security and Net Zero)​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 2 April 2025 to Question 39995 on Long Covid: Clinics, if he will make an assessment of the adequacy of the delivery of long covid care by integrated care boards.

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

Integrated care boards (ICBs) are responsible for commissioning services for people with long COVID. ICBs are allocated funding by NHS England to meet local need and priorities, and to improve outcomes.

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

https://www.clinicalpcs.org.uk/

Earlier this year, NHS England completed a long COVID stocktake, aiming to provide 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.

Executive NHS England board members were updated on the current provision of long COVID services, noting those challenges. Discussions considered service prioritisation and potential COVID Inquiry recommendations.
 
It's amazing how it's obviously all theatre and no one's doing any real work here. They talk about local needs, while there is global failure.

They mention partnering with rehabilitation specialists, when it's the wrong thing to do, completely misunderstands the problem, repeats the same old failures, and hasn't delivered a damn thing. They talk about best practices, but none of those practices are any good or competent. Outcomes are irrelevant on the way out, just as evidence is irrelevant on the way in.

They mention the stocktake, and generally speak of challenges, but the challenges are explicitly that the whole thing has been a giant failure of choice, doing nothing but repeating old mistakes, and never learning anything because no one outside of a handful of people in this system care one bit about this. So even the stocktake was fake, because no one involved cares. No need to even pretend.

It's all hollow, flim-flam, a con, a ruse, malicious and/or impotent lies and nonsense. But none of this matters. They report it as if they're just reading numbers that mean nothing, because the audience is satisfied that the proper theatre has happened. All purely symbolic, and the blatant symbolism they are portraying is systemic failure and complete professional indifference. Any average teenager working a summer job take their job more seriously than this.

They keep getting the same questions, hundreds of times by now, and they keep repeating the same non-answers, nothing ever changes, but there's no accountability anywhere, so the failure is universal. It's completely indistinguishable from intentional cruelty. It looks the same, it feels the same, it has the same outcome and the same hubris and contempt that a system of deliberate cruelty would display to make its contempt clear and send the message that they don't give a damn.

Even sillier, there's literally no difference with countries that don't even bother with the theatre. Exact same failure in outcome, the only difference is that the stage is empty. Here in Canada it's never discussed, nothing was even tried, and the outcomes are identical: total failure.
 
Tao Fogger said:
To support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to establish the Clinical Post-COVID Society to facilitate the ongoing sharing of best practice, to support people affected by long COVID.
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So, no changes then, beyond some token tweaks to the marketing blurb.
 
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