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

Photo of Tessa MuntTessa Munt Liberal Democrat, Wells and Mendip Hills​

To ask the Secretary of State for Health and Social Care, when her Department plans to publish an updated implementation timetable for the outstanding commitments in the ME/CFS Final Delivery Plan, following the progress update issued on 9 October 2026.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

The Department continues to work with NHS England and other partners to deliver the remaining commitments in the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) final delivery plan. Progress on research-related actions will be reported on annually, to the ME/CFS Final Delivery Plan Stakeholder Engagement Group. The Department will provide updates on other actions as appropriate.
 

Photo of John MilneJohn Milne Liberal Democrat, Horsham​

To ask the Secretary of State for Health and Social Care, when a decision will be made on whether to commission a specialised service for people with very severe myalgic encephalomyelitis as laid out in the ME/CFS Delivery Plan.

Photo of John MilneJohn Milne Liberal Democrat, Horsham​

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to support NHS hospitals to provide safe and appropriate care for people with severe and very severe myalgic encephalomyelitis while the development of specialised services remains under consideration.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

Further to the answers provided on 16 July to Question 16893 and on 15 September to Question 21290, the Department, together with NHS England, has developed a template service specification for mild, moderate, and severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The template, once published, will be circulated to integrated care boards to support the commissioning of services for severe ME/CFS.

[Question 16893:

Question​


Sir Julian Smith
Conservative
Skipton and Ripon
Commons
To ask the Secretary of State for Health and Social Care, what steps he is taking to develop specialist expertise in hospitals for treating very severe ME, further to the Prevention of Future Deaths Report published on 8 October 2024.

Answer​


Mrs Sharon Hodgson
Labour
Washington and Gateshead South
Commons

Answered on​

16 July 2026
The Department, together with NHS England, has developed an e-learning programme to help support healthcare professionals in the treatment and care of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The programme consists of four modules, three of which have universal access, while the fourth is targeted at healthcare professionals. This programme includes two modules on ‘Managing Severe ME/CFS’, which also covers very severe ME/CFS, and the second version of this module for healthcare professionals addresses clinical approaches to severe and very severe ME/CFS. The e-learning is available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288(opens in a new tab)

This e-learning, while not mandatory, is expected to support healthcare professionals, including in hospitals, deliver the right care for patients with severe and very severe ME/CFS. Additionally, the National Institute for Health and Care Excellence has produced evidence-based guidelines for the diagnosis and treatment of ME/CFS, including in hospitals, which are expected to be taken fully into account.

Additionally, ME/CFS: the final delivery plan, published in July 2025, included an action to consider whether a specialised service should be commissioned by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS.

Question 21290:

Question​


Tulip Siddiq
Labour
Hampstead and Highgate
Commons
To ask the Secretary of State for Health and Social Care, what guidance her Department has issued to Integrated Care Boards on commissioning services for patients with very severe myalgic encephalomyelitis/chronic fatigue syndrome.

Answer​


Mr James Frith
Labour
Bury North
Commons

Answered on​

15 September 2026
I refer the Hon Member to the answer provided on 16 July 2026 to the Hon Member for Skipton and Ripon to Question 16893(opens in a new tab).

Further to this response, the Department, together with NHS England, has developed a template service specification for mild, moderate, and severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The template, once published, will be circulated to integrated care boards to support the commissioning of services for severe ME/CFS.]
 
Tao Fogger said:

Photo of Tessa MuntTessa Munt Liberal Democrat, Wells and Mendip Hills​

To ask the Secretary of State for Health and Social Care, when her Department plans to publish an updated implementation timetable for the outstanding commitments in the ME/CFS Final Delivery Plan, following the progress update issued on 9 October 2026.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

The Department continues to work with NHS England and other partners to deliver the remaining commitments in the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) final delivery plan. Progress on research-related actions will be reported on annually, to the ME/CFS Final Delivery Plan Stakeholder Engagement Group. The Department will provide updates on other actions as appropriate.
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Tao Fogger said:
deliver the remaining commitments
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"remaining" commitments?! Is this job done then...?!
 
Nightsong said:
I wonder if the problem is with the reviewers that MRC are turning to, or whether there's a higher-level roadblock to funding ME/CFS related studies from within MRC itself.
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Addressing a reason why the MRC is not funding SequenceME&LC; we have not applied to them for funding.

Our reasoning is that is seems clear to us that the next phases of this project do not fit regular funding applications, for example to UKRI MRC, due to the large sums involved and that as the project is to generate data rather than to translate previous discoveries towards the clinic. Also the very low success rate is a secondary factor in our thinking.

And as to how the funding of £4.75m came about, a discussion was had with the Office for Life Sciences that ended with a request from them for a brief funding application. We were advised not to apply for more than £5m earlier this year and after a review process we were fortunate to be awarded the funding.
 

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 individuals diagnosed with myalgic encephalomyelitis.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

I refer the Hon Member to the answer provided on 16 July in response to Question 16891. In addition, the Department provided a progress update on the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) final delivery plan on 9 October 2026.

To support improvements in care, the Department and NHS England have developed a template service specification for mild, moderate, and severe ME/CFS. The template, once published, will be circulated to integrated care boards to support the commissioning of services for ME/CFS.

[Question 16891:

Question​


Sir Julian Smith
Conservative
Skipton and Ripon
Commons
To ask the Secretary of State for Health and Social Care, what recent steps his Department has taken to support those with very severe ME.

Answer​


Mrs Sharon Hodgson
Labour
Washington and Gateshead South
Commons

Answered on​

16 July 2026
The Department, together with NHS England, has developed an e-learning programme to help support healthcare professionals in the treatment and care of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The programme consists of four modules, three of which have universal access, while the fourth is targeted at healthcare professionals. This programme includes two modules on ‘Managing Severe ME/CFS’, which also covers very severe ME/CFS, and the second version of this module for healthcare professionals addresses clinical approaches to severe and very severe ME/CFS. The e-learning is available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288(opens in a new tab)

This e-learning, while not mandatory, is expected to support healthcare professionals, including in hospitals, deliver the right care for patients with severe and very severe ME/CFS. Additionally, the National Institute for Health and Care Excellence has produced evidence-based guidelines for the diagnosis and treatment of ME/CFS, including in hospitals, which are expected to be taken fully into account.

Additionally, ME/CFS: the final delivery plan, published in July 2025, included an action to consider whether a specialised service should be commissioned by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS.]
 
Andy said:
Addressing a reason why the MRC is not funding SequenceME&LC; we have not applied to them for funding.
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Thanks for sharing that information Andy. Can you clarify, have you applied to, or approached, any research bodies for the additional funding required for Sequence? Where are you hoping that the extra funding will come from?

The reason I am asking is so that we can better frame our emails to MPs to ask them to apply pressure to the appropriate bodies.
 
Lou B Lou said:
@Robert 1973 - Hi Robert, would you have the skeleton of such a letter, or a template type letter that could be copied and used by other patients who want to write to their MPs about this unacceptable situation of the MRC refusing any funding to Sequence? If you are up to it of course.
.
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As you may have seen #ThereforME have produced a template email for writing to MPs on the back of the Beth Dobbin news: https://docs.google.com/document/d/19gKvzw2dzPRWMWtR-eR9OGCNnaS3xhL8iwqCRdeaWLw/edit?usp=sharing

Their Beth Dobbin campaign briefing document for MPs is available here:

My experience is that the more you can use your own words, the more likely your MP is to respond and act.

There are some things I would have put differently but I support the campaign.
 
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Robert 1973 said:
Can you clarify, have you applied to, or approached, any research bodies for the additional funding required for Sequence?
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I assuming you mean "research funding bodies". I think it is fair to say that our considered opinion is that there are no standard UK governmental funding avenues that our project would fit in, and so be worth applying to.

Robert 1973 said:
Where are you hoping that the extra funding will come from?
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We have and will apply to any funding opportunity that our study fits with, but we do factor in possible rate of success, so general funding calls which typically have very low rates of success will typically not be considered. We have been in receipt of both charity and philanthropic funding, and continue to explore the possibilities for further funding from those two sources in the absence of any further governmental support.

Hope that helps.
 
Thanks @Andy. Very helpful.

From your reply it sounds like the best approach is probably for us to ask our MPs to ask the government to provide further funding for Sequence.

My recollection is that DecodeME was mostly funded by the MRC. Am I right to infer that they have indicated that it would be a waste of time to apply to them for Sequence funding?
 
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Photo of Ruth JonesRuth Jones Chair, Welsh Affairs Committee​

To ask the Secretary of State for Health and Social Care, pursuant to the answer of 13 October 2026 to Question 34398 on ME/CFS: Health Services, how many of the people who accessed the e-learning modules have completed them.

Photo of Ruth JonesRuth Jones Chair, Welsh Affairs Committee​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 13 October 2026 to Question 34398 on ME/CFS: Health Services, what assessment her Department has made of the effectiveness of its efforts to promote the e-learning modules; and what further steps it plans to take to improve participation among healthcare professionals.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

As of October 2026, 2,133 people have accessed any or all of the e-learning modules. Of those, 1,064 people have completed at least one module.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan committed to promoting the e-learning through a range of channels such as the Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists. The modules were also added to the National Institute for Health and Care Excellence tools and resources page for ME/CFS. The Department is continuing to explore further possible avenues for promotion.
 

[Not strictly speaking about ME or Long Covid, but relevant to several s4me members]

Photo of Will StoneWill Stone Labour, Swindon North​

To ask the Secretary of State for Health and Social Care, if she will provide guidance on access to flu, covid, shingles and other vaccinations for house bound residents.

Photo of Diana R. JohnsonDiana R. Johnson Minister of State (Department of Health and Social Care)​

General practitioners are contractually required to offer vaccinations to 100% of eligible patients, including housebound patients, and must ensure that appointments are acceptable and convenient to those patients. This is in accordance with the General practice enhanced service specification – COVID-19 and adult influenza vaccination programmes: 1 April 2026 to 31 March 2027; The National Health Service (General Medical Services Contracts) Regulations 2015 for other routine vaccinations; and the General practice vaccination and immunisation services: standards and core contractual requirements, available at the following three links respectively:

https://www.england.nhs.uk/long-rea...n-programmes-2026-27/#7-primary-care-networks

https://www.legislation.gov.uk/uksi/2015/1862/schedule/3/paragraph/5/made

https://www.england.nhs.uk/long-rea...requirements/#3-core-contractual-requirements
 
Tao Fogger said:

Photo of Ruth JonesRuth Jones Chair, Welsh Affairs Committee​

To ask the Secretary of State for Health and Social Care, pursuant to the answer of 13 October 2026 to Question 34398 on ME/CFS: Health Services, how many of the people who accessed the e-learning modules have completed them.

Photo of Ruth JonesRuth Jones Chair, Welsh Affairs Committee​

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 13 October 2026 to Question 34398 on ME/CFS: Health Services, what assessment her Department has made of the effectiveness of its efforts to promote the e-learning modules; and what further steps it plans to take to improve participation among healthcare professionals.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

As of October 2026, 2,133 people have accessed any or all of the e-learning modules. Of those, 1,064 people have completed at least one module.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan committed to promoting the e-learning through a range of channels such as the Royal College of General Practitioners, the Chartered Society of Physiotherapy and the Royal College of Occupational Therapists. The modules were also added to the National Institute for Health and Care Excellence tools and resources page for ME/CFS. The Department is continuing to explore further possible avenues for promotion.
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This is the type of specific questioning MPs should be encouraged to pursue.
 

Photo of Tessa MuntTessa Munt Liberal Democrat, Wells and Mendip Hills​

To ask the Secretary of State for Health and Social Care, which clinical trials for potential new treatments for ME she is funding; from which budget the funding for those trials is sourced; how much funding is allocated for those trials; which research institutions are leading those trials; what the time-frame is for those trials; and what the descriptor is for those trials.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

No clinical trials are currently being funded by the Department on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, recently, two application development awards were made to projects intending to investigate the feasibility of a new clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including long COVID and ME/CFS. The National Institute for Health and Care Research has awarded around £398,000 to two projects: “Designing an inclusive platform trial for people living with Post-Acute Infection Syndromes (PAIS)” at the University of Leicester and “D-SUPPORT-ME" at the University of East Anglia. Further information on clinical trials is available at the ISRCTN registry at the following link:

https://www.isrctn.com
 

Photo of Chris CoghlanChris Coghlan Liberal Democrat, Dorking and Horley​

To ask the Secretary of State for Health and Social Care, what assessment she has made of the potential merits of undertaking a cost-benefit analysis of the potential return on investment of funding ring-fenced biomedical research into ME/CFS to help inform the government’s strategy in reducing long-term sickness and economic activity.

Photo of James FrithJames Frith The Parliamentary Under-Secretary for Health and Social Care​

The Department has not made a specific assessment of the potential merits of undertaking a cost-benefit analysis of the potential return on investment of funding ring-fenced myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research. I refer the Hon. Member to the answer provided on 21 October in response to Question 35172 regarding the Department’s position on ring-fenced funding.

[Question 35172:

Question​


Perran Moon
Labour
Camborne and Redruth
Commons
To ask the Secretary of State for Health and Social Care, what assessment her Department has made of the potential merits of the funding model for post-infectious disease research in Germany, specifically its €500 million National Decade Against Post-Infectious Diseases…
Show full question

Answer​


Mr James Frith
Labour
Bury North
Commons

Answered on​

21 October 2026
No specific assessment or cost-benefit analysis of the kind described has been carried out, but we routinely monitor innovative approaches and treatments adopted by our counterparts overseas to see what lessons there may be for our own health services.

Regarding ring-fenced funding, I refer the Hon. Member to the answer provided on 5 November 2025 in response to Question 86002(opens in a new tab), and on regional tertiary specialist centres, I refer him to the answers provided on 29 April and 6 July in response to Questions 124134(opens in a new tab) and 13299(opens in a new tab).

Question 86002:

Question​


Tom Morrison
Liberal Democrat
Cheadle
Commons
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure a strategic approach to biomedical research into myalgic encephalomyelitis and chronic fatigue syndrome.

Answer​


Dr Zubir Ahmed
Labour
Glasgow South West
Commons

Answered on​

5 November 2025
The Department funds research through the National Institute for Health and Care Research (NIHR).

We are committed to working with the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes. As part of our approach, together with the Medical Research Council (MRC), we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS Final Delivery Plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around 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 research, including ME/CFS and long COVID, in November to stimulate further research in this field.

We have previously discussed ringfenced funding with the ME/CFS community during the development of the Final Delivery Plan for ME/CFS, as well as at subsequent meetings and roundtables on ME/CFS and long COVID. However, this is not usual practice for research funders as applications in all areas should compete for the funding available to uphold transparency and accountability. The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Our position is that welcoming applications on ME/CFS to all programmes enables maximum flexibility both in terms of the amount of research funding and the type of research which can be funded.

There has been no specific comparative review on the level of funding for research into ME/CFS compared to other illnesses. The Department invests over £1.6 billion each year on research through the NIHR, including on ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.]
 
Tao Fogger said:
No clinical trials are currently being funded by the Department on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
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So they lied to the BBC in their statement? Just straight up lied. That isn't very common, its not often government just makes things up for statements to the press, but also totally onbrand for the way the UK government has handled ME/CFS and its sufferers for decades.
 
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