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
 
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