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

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Work and Pensions, whether she has made an assessment of the potential impact of the Universal Credit Bill on young people under 22 with Myalgic Encephalomyelitis.

Photo of Stephen TimmsStephen Timms The Minister of State, Department for Work and Pensions​

The Universal Credit Bill makes no change to the eligibility of young people under 22 for the Universal Credit Health element. The proposal to restrict access to the element was the subject of a consultation which closed on 30 June. The responses to the consultation are now being reviewed, and the Government’s conclusion will be announced in a white paper in the autumn.
 

ME/CFS final delivery plan​


Department of Health and Social Care written statement – made at on 22 July 2025.

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

I am pleased to announce to the House that today the Government has published its final delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

This government has a clear commitment to ensure that people with long-term conditions like ME/CFS can live as independently as possible and see their overall quality of life enhanced. This plan will help us take an important step towards achieving this.

ME/CFS can be an incredibly disabling condition to live with, for as many as 390,000 people living in the UK. Its fluctuating symptoms can make it difficult for those affected to take part in everyday activities, enjoy a family or social life, access services they need and engage in work or education. Those with severe or very severe ME/CFS face particular challenges, finding even the most basic daily tasks or activities impossible.

The aim of the final delivery plan for ME/CFS is to improve the experiences of those affected, with a focus on boosting research, improving attitudes and education, and enhancing care and support. The plan sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.

People living with ME/CFS often face stigma and misunderstanding, stemming from a lack of awareness and education about the condition. This lack of awareness and understanding can significantly impact the quality and availability of services and support for those affected.

Research too will be particularly important in helping to improve understanding of the condition, informing improved diagnosis, the development of new effective treatments and better support for patients.

In this respect, the plan sets out a long-term vision for a coordinated, well-funded, and inclusive research environment that reflects the complexity and severity of ME/CFS. As part of this, we will launch a new funding opportunity with a National Institute for Health and Care Research (NIHR) Application Development Award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS.

On education and awareness, the plan commits to increasing knowledge of ME/CFS among public sector professionals, as well as the wider public, by ensuring that information and learning resources are up to date, publicised and signposted.

Through a range of measures, the plan also commits to: improving the quality and accessibility of health services and adult social care; appropriate and timely support for children and young people in education, and helping people with ME/CFS to find and maintain employment.

While many actions in the plan are specific to ME/CFS, others relate to wider initiatives that will benefit people with long-term conditions, including those with ME/CFS. The recently published 10 Year Health Plan set out the three big shifts our NHS needs to be fit for the future: from hospital to community; from analogue to digital; and from sickness to prevention. Services will be moved closer to, and into, people’s homes, providing faster diagnosis and faster access to treatment for patients with long-term conditions like ME/CFS. By 2028/29, neighbourhood health teams will be organised around the needs of their patients. Joined up working across hospitals and into community settings will be created, with multi-disciplinary teams, which can provide wrap around support services.

I would like to thank the many people with ME/CFS, carers, health and care professionals, researchers and research funders, charities and patient groups, and other interested organisations and individuals who contributed to the public consultation on the interim delivery plan. Their insights into the realities of living with the condition will help ensure that the agreed actions will meet real needs and help address the health and care inequalities people living with ME/CFS can experience.

I would also like to thank members of the ME/CFS Task and Finish Group, who so generously gave their time to contribute to the development of the plan, and for their continued support in agreeing further actions where these will be required. We have listened very carefully to Group members and recognise that further work will be needed, and we will continue to build on the foundations of these actions well beyond the publication of this plan.

Whilst the final delivery plan covers England, the devolved governments have considered the policy implications arising from the consultation on the interim delivery plan and discussions within the Task and Finish Group for their own nations.

A copy of the final delivery plan will be placed in the Libraries of both Houses.
 
As part of the debate on the second reading of the Universal Credit Bill in the House of Lords, the following comment was made, which I thought might be of interst:

Photo of Baroness Scott of Needham MarketBaroness Scott of Needham Market Deputy Chairman of Committees, Deputy Speaker (Lords), Chair, Home-based Working Committee, Chair, Home-based Working Committee ​

My Lords, I have a long-standing interest in ME—chronic fatigue syndrome—having seen at first hand its awful impacts on people’s lives. It is good to be able to say something this evening, because today we saw the publication of the long-awaited delivery plan on ME. It is very welcome to see that. The Ministerial foreword says that we need

“a better understanding of the condition”.

I think patients with ME would certainly agree.

For context, an estimated 400,000 people in the UK are living with ME, and around a quarter of those are disabled to the extent that they spend most of their lives in bed. The remainder have symptoms on a very wide spectrum. As we heard from the noble Baroness, Lady Brinton, it is estimated that around 381,000 people have serious post-viral symptoms that have lasted for more than two years as a result of long Covid. Long Covid is not the same as ME, but there are some similarities.

The sad truth is that for many people ME is a lifelong condition. Its severity and impact vary enormously, not just between individuals but for the same individual, both over the long term and as part of a pattern of symptoms in the short term. Flare-ups are common, relapses occur, and it is entirely unpredictable.

For claimants, that means tasks that can be completed on some days cannot be completed on others, or simply cannot be sustained. I had a look at the training module for assessors, which says, “This training will take you approximately 30 minutes to complete”. The training is not bad, but I suggest to the Minister that 30 minutes is wholly inadequate to train an assessor in determining the condition of someone who is presenting such a complex set of conditions.

The delivery plan, which I referred to, says that we need

“to ensure that … the right decisions are made the first time”.

Amen to that, but the briefing from Scope tells us that around 49% of universal credit decisions reaching appeal are overturned. I cannot help but wonder whether that is related to the level of training on the part of the assessors. It would be very good if the Minister could say a word or two about that.

From April next year, new claimants will get a reduced limited capability for work rate, even if they have the most severe form of ME. Although it is lifelong and often seriously disabling, because it fluctuates and has an uncertain prognosis, many people will simply fail the “severe, lifelong condition” criteria. Many will not reach the strict “no improvement expected” test and thus will be locked out of the enhanced support.

Current regulations refer to

“the majority of the occasions on which the claimant … attempts to undertake the activity”.

The new regulations refer to “all occasions”. That is highly problematic for anyone with a fluctuating condition. I am talking this evening about ME, but we have heard from many other organisations and from individuals who have fluctuating conditions.

Freezing for four years means that disability support will not rise with inflation while other basic costs such as food and energy keep rising. It is a fact that many ME patients carry on working—life is tough, but they do it—and there are many others who aspire to work. They want to recover enough to one day go back to work, but it is complex and unpredictable. Their general health and well-being are key if they are to get back to work. Being pushed into poverty by measures in the Bill and by other measures will simply further disadvantage people with this condition.

Although not in the Bill, there is consultation on removing the health element of universal credit for under-22s. That is causing widespread concern, particularly among families and carers of young people with ME. The median onset age for ME is 15.

I agree with the comments made by Steve Darling, my colleague in the House of Commons, that the key to achieving the Government’s aspirations for welfare reform is genuine engagement with the people affected. I say to the Minister that, from reading the briefings from the organisations, it is very clear there is a huge gulf between the picture that she has painted today and the understanding of the organisations, and, perhaps even more importantly, the testimony from many hundreds of people who are now desperately worried about what the future holds for them. We need collectively to do much better to offer them not just a financial leg-up but some reassurance that we have their back.

[The full debate can be read here: https://www.theyworkforyou.com/lords/?id=2025-07-22a.188.0]
 
Tao Fogger said:
I say to the Minister that, from reading the briefings from the organisations, it is very clear there is a huge gulf between the picture that she has painted today and the understanding of the organisations, and, perhaps even more importantly, the testimony from many hundreds of people who are now desperately worried about what the future holds for them.
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Hear, hear.
 
Tao Fogger said:
Although not in the Bill, there is consultation on removing the health element of universal credit for under-22s. That is causing widespread concern, particularly among families and carers of young people with ME. The median onset age for ME is 15.
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Presumably here it is meant that 15 is the median age for young people with ME/CFS, even then that is confusing.

If it is meant 15 is the median age for all people with ME/CFS, that makes no sense at all unless I have completely misunderstood the meaning of ‘median’.
 
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