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

Lou B Lou said:
''To ask the Secretary of State for Health and Social Care, if he will hold discussions with the British Association of Clinicians in ME/CFS (BACME) on the geographical availability of regional specialist services for ME/CFS; and if he will undertake a mapping exercise to list the areas that (a) are and (b) are not covered.'
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This is getting frustrating. BAACME do not provide any sort of service as far as we can see, so why hold discussions with them?
 
Jonathan Edwards said:
This is getting frustrating. BAACME do not provide any sort of service as far as we can see, so why hold discussions with them?
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We don't know who prompted Sian Berry's Question, who briefed her, and probably never will. However Sian Berry's position as Patron of the Sussex ME/CFS Society, together with the Society Chair's frequent lauding of BACME, suggests the prompting could have come from The Sussex ME/CFS Society.




British Association for Clinicians in ME/CFS (BACME) - Sussex & Kent ME/CFS Society

BACME provides information to support clinicians in their work with people with ME/CFS. These management guides and supporting documentation are posted at the Resources section of their website. You can download any of these guidelines that you feel may be welcomed by your GP or any professional...
measussex.org.uk measussex.org.uk

'BACME provides information to support clinicians in their work with people with ME/CFS. These management guides and supporting documentation are posted at the Resources section of their website.

You can download any of these guidelines that you feel may be welcomed by your GP or any professional who may be trying to help you.'

https://bacme.info/library/management_guides/
 
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Thank you @MeSci for copies of the correspondence and for responding so thoroughly to Caroline Lucas.

I hope that Sian Berry learns of the concerns of many in the ME community about the Sussex and Kent ME/CFS society. If we have a Brighton Pavillion constituency member, hopefully s/he might consider writing to her. She looks very secure however with an impressive majority.

"In the 2024 general election, Berry was elected Member of Parliament (MP) for Brighton Pavilion with 28,809 votes (54.8%) and a majority of 14,290 over the second-placed Labour candidate." ( Wiki)

The other Sussex society ReMEmber no longer exists.
Janice and Bill ( Kent) have stepped down as founder director and secretary of reMEmber and, there being no one available to take over from them, this Mid Sussex-based ME/CFS group has had to close. (MEAssociation).
 
Further to my last post on the BACME related Parliamentary Question from Sian Berry -

We do know that previous Brighton/Hove MPs who were at the time Patrons of the Sussex ME/CFS Society did ask Parliamentary Questions that were very clearly prompted by the Sussex Society. This one about the Lightning Process, which the Sussex Society was actively promoting at the time, via a stall at their Conference for just one example.


This one for example.

2009
Celia Barlow, MP for Hove:
"What guidance his Department has issued to NHS trusts on the use of the lightning process in the treatment of people diagnosed with chronic fatigue syndrome."


Minister of State Dept of Health, Phil Hope:
"The Department has issued no guidance on this process, because we expect decisions on clinical interventions, whether they involve complementary or alternative treatments, to be made by front-line clinicians. In making such decisions, clinicians will take into account evidence for the safety and clinical and cost-effectiveness of the treatment concerned."


Ms Barlow:
"I thank my hon. Friend for his reply. Sussex ME and Chronic Fatigue Society works tirelessly to assist the 6,000 adults and children across the county who suffer from the disease, and several of those people have been contacted about the success of the lightning treatment. Will he assess that treatment, in conjunction with the bodies that he has mentioned, and monitor how successful it is?"


Phil Hope:
"It is not for the Department to undertake that activity. The National Institute for Health and Clinical Excellence, the independent body, issues guidance on the use of such treatments, and that guidance is the subject of a judicial review this week. It is to that independent body that those patients and organisations should make their representations, so that it can make the appropriate recommendations on the use of such treatments."


 
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Photo of Gregory StaffordGregory Stafford Opposition Assistant Whip (Commons)​

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the current strategic approach to ME/CFS research; and whether his Department plans to develop a coordinated national research strategy for the condition.

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

We have outlined our strategy to support myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), research in the ME/CFS Final Delivery Plan published in July. These steps include a research showcase event, a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions, and the announcement of new funded studies in health and care services, and research infrastructure and capacity-building.

We are determined to accelerate progress in the treatment and management of ME/CFS and will continue working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes.

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including 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.
 

Photo of Al PinkertonAl Pinkerton Liberal Democrat Spokesperson (Europe)​

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing research funding for myalgic encephalomyelitis within NHS services in Surrey Heath Constituency.

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

The Government is determined to accelerate progress in the treatment and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), including through addressing barriers to research. We have outlined our approach to supporting ME/CFS research in the ME/CFS Final Delivery Plan, which was published in July. These steps include a research showcase event, a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions, and the announcement of new funded studies in health and care services and research infrastructure and capacity building. We will continue working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes.

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including 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. The NIHR works closely with regional National Health Service trusts through funding research infrastructure and research delivery staff embedded in NHS organisations, ensuring research is translated into practice.

The NIHR and the Medical Research Council have provided over £3.2 million towards the DecodeME study to investigate if there is a genetic component to the condition. 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, informing the development of diagnostics and treatments.
 

Photo of Al PinkertonAl Pinkerton Liberal Democrat Spokesperson (Europe)​

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of increasing specialist support services for people with myalgic encephalomyelitis in Surrey Heath Constituency.

Photo of Al PinkertonAl Pinkerton Liberal Democrat Spokesperson (Europe)​

To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure timely access to NHS services for people with myalgic encephalomyelitis in Surrey Heath Constituency.

Photo of Al PinkertonAl Pinkerton Liberal Democrat Spokesperson (Europe)​

To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of (a) care and (b) support for people with myalgic encephalomyelitis in Surrey Heath Constituency.

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

We published the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), final delivery plan on 22 July 2025. The plan focusses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those in the Surrey Heath Constituency.

The ME/CFS final delivery plan includes an action for the Department 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 people with very severe ME/CFS across England. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

NHS England has also started its work on co-designing resources for systems to improve services for mild and moderate ME/CFS, including for patients in the Surrey Heath constituency. It will meet a group of key stakeholders to progress this in the coming weeks.

To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the final delivery plan, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. All three sessions of the e-learning programme, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
 
It's totally unacceptable to present reheated leftovers ie “showcasing research” which has all the sincerity of a show trial, and was last decades "news" or rather empty gesture, as a new strategy. This is how to shaft the community in broad daylight whilst smiling 101. Only possible because our charities refuse to truly represent the range of strong patient opinion in rejection of these tiny tokens.

We will no doubt be discussing the new government £2.2m LC investment- an app and pacing and nursing care for the long covid severe in the lovingly named TLC study. Which shows their master plan on how to silently turn the page on 30 disastrous years and continue with management, just different management.
Throw the screwed up #mecfs ones in the bin & leave them there, without apology, research or treatment & start afresh with a clean slate with LC, doing what the #ME experts had advised all along. Designing out harms, as the severely affected like Me die off in the dark, with a cold calculated way to “create better outcomes” without justice or accountability.

The b****
 
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Photo of Lee AndersonLee Anderson Reform UK, Ashfield​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support research into ME/CFS.

Photo of Lee AndersonLee Anderson Reform UK, Ashfield​

To ask the Secretary of State for Health and Social Care, what steps his department are taking to improve the reliability of ME/CFS diagnosis tests.

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

We have outlined our approach to supporting myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), research in the ME/CFS Final Delivery Plan published in July. These steps include a research showcase event, a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions, and the announcement of new funded studies in health and care services, and research infrastructure and capacity-building.

We are determined to accelerate progress in the treatment and management of ME/CFS and will continue working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes.

The National Institute for Health and Care Research (NIHR) and Medical Research Council have provided over £3.2 million towards the DecodeME study which aims to understand if there is a genetic component to the condition. While there is currently no diagnostic test for ME/CFS, we hope that DecodeME will help 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. Further research is needed for the development of diagnostic tests and targeted treatments.

The Department funds research through the NIHR. The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS and the development of diagnostic tests. 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.
 

Photo of Lee AndersonLee Anderson Reform UK, Ashfield​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve access to ME/CFS support in Ashfield.

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

Residents of Ashfield with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), are supported primarily through the Community Pain Management Service (CPMS), commissioned by the NHS Nottingham and Nottinghamshire Integrated Care Board for the mid Nottinghamshire area, which covers Mansfield and Ashfield and Newark and Sherwood.



The CPMS delivers a multi-disciplinary, community-based service for adults, those aged 16 years old and over, with chronic pain and/or ME/CFS. The service is designed to be accessible, equitable, and holistic, supporting both physical and psychological needs.

Ashfield residents can access the service at several local clinics, including Ashfield Health and Wellbeing Centre in Sutton-in-Ashfield, as well as other sites across mid Nottinghamshire, including Mansfield Community Hospital and Oak Tree Health Centre.

Referrals are accepted from general practitioners, musculoskeletal services, and hospital consultants. The service acts as a single point of access, ensuring streamlined and timely triage and assessment.
 

Photo of Lee AndersonLee Anderson Reform UK, Ashfield​

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help increase awareness of ME symptoms.

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

We published the final delivery plan (FDP) for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the FDP, the Department of Health and Social Care (DHSC) has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. All three sessions, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, of the e-learning programme are now available at the following link:

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

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.

As outlined in the FDP, we will improve awareness of ME/CFS by launching a public awareness initiative to promote wider awareness and understanding of the condition and support available to people with ME/CFS and their families.

DHSC will also engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families, as well as best practice in relation to safeguarding responsibilities. This will be taken forward in parallel with NHS England’s actions on ME/CFS services and neighbourhood multidisciplinary teams for children and young people.

Furthermore, as outlined in the FDP, the Department for Education is encouraging the sharing of ME/CFS-specific information with relevant organisations and promoting relevant training and resources to support children and young people.
 

Photo of Lee AndersonLee Anderson Reform UK, Ashfield​

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of testing for other commonly linked conditions when running diagnosis tests for ME/CFS.

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

The Department recognises the significant challenges faced by individuals living with multiple complex conditions such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and Ehlers-Danlos syndrome (EDS). Our approach focuses on improving care coordination and access to appropriate services.

For ME/CFS, we have published a cross-Government final delivery plan, which sets out actions to boost research, improve professional education, and enhance support for daily living, including community-based services and better benefit assessments. While the plan is specific to ME/CFS, it acknowledges overlaps with other long-term conditions such as EDS and commits to exploring synergies during implementation.

Additionally, the 10-Year Health Plan aims to transform services and outcomes for people living with complex conditions such as EDS and ME/CFS by prioritising integrated, personalised care. The plan focuses on earlier diagnosis and promotes multidisciplinary teams and community-based services to deliver coordinated support closer to home, reducing reliance on hospital care. Digital innovations, including remote monitoring and personalised care planning, will help manage long-term conditions more effectively.

Guidance published by the National Institute for Care Excellence on the diagnosis and management of ME/CFS, reference code NG206, does not recommend routine testing for conditions such as EDS as part of the diagnostic process for ME/CFS. The guideline makes clear that there is no single test for ME/CFS and diagnosis should be based on the clinical assessment of symptoms persisting for at least three months. It advises clinicians to carry out investigations only to rule out other possible causes of symptoms or to identify comorbidities that require separate management. Testing for other conditions, like EDS, should be considered if clinical features suggest their presence, rather than as a standard part of ME/CFS assessment.
 

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​

To ask His Majesty's Government what assessment criteria they are using to assess the case for commissioning a specialised service for very severe chronic fatigue syndrome.

Photo of Baroness MerronBaroness Merron The Parliamentary Under-Secretary for Health and Social Care​

The myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), final delivery plan, published on 22 July 2025, includes an action for the Department 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 ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

Three factors determine whether a service is a prescribed specialised service. These are: the number of individuals who require the service; the cost of providing the service or facility; and the number of people able to provide the service or facility.
 
Tao Fogger said:
Three factors determine whether a service is a prescribed specialised service. These are: the number of individuals who require the service; the cost of providing the service or facility; and the number of people able to provide the service or facility.
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Number of individuals maybe 100k. Cost of providing something that is so alien to the NHS? Substantial given how incredibly ill server patients and the immense cost of errors. The number of people able to provide this service currently is 0.
 
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