UK House of Lords/ House of Commons Questions

[Tao Fogger]

A debate on POTS took place in Westminster Hall yesterday.

Cat Smith Chair, Procedure Committee, Chair, Procedure Committee ​

I beg to move,

That this House
has considered the matter of support for people with postural tachycardia syndrome.

It is a pleasure to see you in the Chair this morning, Sir Desmond. I am grateful for this opportunity to look at a health issue that is often overlooked, misunderstood and under-resourced within our national health service: postural orthostatic tachycardia syndrome, or PoTS for short. It is not a rare disease, yet for too long people living with PoTS have fallen through the cracks of a system that was never designed to recognise or support them. My notes are based on the heartbreaking reality faced by my constituents and the tens of thousands of people across the UK who have PoTS. I must declare, Sir Desmond, that I have had a diagnosis of PoTS since 2012, so some of what I will say is taken from my own experience as well.



Both ME and Long Covid were mentioned. The full debate can be read here: https://www.theyworkforyou.com/whall/?id=2025-10-14a.56.0

 

[Cinders66]

“Establishing a research hub for ME/CFS would not provide the same level of flexibility”

“Establishing a research hub for ME/CFS would not provide the same level of flexibility”

When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health and Social Care on "how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years" the long in words but short on figures and specifics from Ashley Dalton...

www.meresearch.org.uk

When Tom Morrison MP tabled a Written Question (UIN 72045) to the Department for Health and Social Care on “how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years” the long in words but short on figures and specifics from Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention did provide an albeit disappointing piece of insight into government thinking (emphasis added by ME Research UK).

The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection conditions such as ME/CFS, and research funding is available. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded. Establishing a research hub for ME/CFS would not provide the same level of flexibility. The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.

Welcoming applications has delivered a p*** poor level of progress over twenty years for some of the sickest people in the country, harmed by the nhs itself. The fact they feel they can turn down models that they themselves have funded for other areas, with such flimsy excuses and lame alternative, shows what a walkover they regard the m;e sector, which if it were a person would be getting recommendations for assertiveness training

 

[Tao Fogger]

Siân Berry Green Spokesperson (Crime and Policing), Green Spokesperson (Justice), Green Spokesperson (Transport), Green Spokesperson (Work and Pensions), Green Spokesperson (Culture, Media and Sport), Green Spokesperson (Democratic Standards)​

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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• Hansard source(Citation: HC Deb, 20 October 2025, cW)

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

A stocktake of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services was concluded by NHS England in December 2024. Although not all integrated care boards responded to the survey, the stocktake did show variation in models across England.

Departmental officials will continue to work with the British Association of Clinicians in ME/CFS on the implementation of the final ME/CFS delivery plan, which was published in July.

 

[Tao Fogger]

David Smith Labour, North Northumberland​

To ask the Secretary of State for Health and Social Care, whether he considered including people suffering from Long Covid within the Clinical risk group eligible for the covid-19 vaccination in the Autumn 2025 vaccination programme.

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• Hansard source(Citation: HC Deb, 20 October 2025, cW)

Juliet Campbell Labour, Broxtowe​

To ask the Secretary of State for Health and Social Care, for what reason the Joint Committee on Vaccination and Immunisation limited eligibility for covid-19 booster vaccinations; and whether his Department has made an assessment of the potential merits of including unpaid carers under 75 within the eligibility for those vaccinations.

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• Hansard source(Citation: HC Deb, 20 October 2025, cW)

Cameron Thomas Liberal Democrat, Tewkesbury​

To ask the Secretary of State for Health and Social Care, if he will make it his policy to extend the eligibility criteria for the covid-19 vaccine to include people with asthma.

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• Hansard source(Citation: HC Deb, 20 October 2025, cW)

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

The Government is committed to protecting those most vulnerable to COVID-19 through vaccination, as guided by the independent Joint Committee on Vaccination and Immunisation (JCVI). The primary aim of the national COVID-19 vaccination programme remains the prevention of serious illness (hospitalisations and deaths) arising from COVID-19. Population immunity to COVID-19 has been increasing due to a combination of naturally acquired immunity following recovery from infection and vaccine-derived immunity. COVID-19 is now a relatively mild disease for most people, though it can still be unpleasant, with rates of hospitalisation and death from COVID-19 having reduced significantly since COVID-19 first emerged.

The focus of the JCVI advised programme has therefore moved towards targeted vaccination of the two groups who continue to be at higher risk of serious disease, including mortality. These are the oldest adults and individuals who are immunosuppressed.

On 13 November 2024, JCVI published advice on who should be offered vaccination in autumn 2025. On 26 June 2025, the Government accepted the JCVI’s advice that in autumn 2025, a COVID-19 vaccination should be offered to the following groups:

• adults aged 75 years and over;
• residents in care homes for older adults;
• individuals aged 6 months and over who are immunosuppressed (as defined in the ‘immunosuppression’ sections of tables 3 or 4 in the COVID-19 chapter of the UK Health Security Agency Green Book).

The Government has no plans to change eligibility for autumn 2025. It has accepted the JCVI advice for this campaign in full. As for all vaccines, the JCVI keeps the evidence under regular review.

 

[Lou B Lou]

Siân Berry Green Spokesperson (Crime and Policing), Green Spokesperson (Justice), Green Spokesperson (Transport), Green Spokesperson (Work and Pensions), Green Spokesperson (Culture, Media and Sport), Green Spokesperson (Democratic Standards)​

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.

• Tweet Share
• Hansard source(Citation: HC Deb, 20 October 2025, cW)

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

A stocktake of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services was concluded by NHS England in December 2024. Although not all integrated care boards responded to the survey, the stocktake did show variation in models across England.

Departmental officials will continue to work with the British Association of Clinicians in ME/CFS on the implementation of the final ME/CFS delivery plan, which was published in July.

Sian Berry MP (Brighton Pavilion), 20th October 2025:

"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."




Sian Berry, MP for Brighton Pavilion, yet another Brighton MP being a puppet for Colin Barton of the Sussex ME/CFS Society so-called patient group.

Colin Barton even drives a wedge between Brighton ME patients and their own MPs. The MPs believing Barton's BPS drivel and doing his bidding, sidelining the actual constituents.

Barton has been recruiting Sussex MPs for promotion of his sham society/patient group, for his psycho-behavioural agenda, for decades.

When having to choose who to believe, constituents who try to inform/educate their own MPs about ME, or Mr Barton with his glossy-but-false charity facade - the MPs believe Barton!

When the CFS clinics first started up, back in the mid 2,000s Barton was in there, aiding Peter White in promoting them and woe betide any ME patient who pointed out the clinics were not in our interests.

And he's Still Doing It.

The Sussex ME/CFS Society perpetuates a Shameful Betrayal of ME patients in Sussex, and all over the country.

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[Cinders66]

Siân Berry Green Spokesperson (Crime and Policing), Green Spokesperson (Justice), Green Spokesperson (Transport), Green Spokesperson (Work and Pensions), Green Spokesperson (Culture, Media and Sport), Green Spokesperson (Democratic Standards)​

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.

• Tweet Share
• Hansard source(Citation: HC Deb, 20 October 2025, cW)

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

A stocktake of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services was concluded by NHS England in December 2024. Although not all integrated care boards responded to the survey, the stocktake did show variation in models across England.

Departmental officials will continue to work with the British Association of Clinicians in ME/CFS on the implementation of the final ME/CFS delivery plan, which was published in July.

Here is the possible influence of the Sussex m.e group. We’ve got Sian Berry the green party , who should be one of our strongest allies and instead she’s calling for talking with BACME about specialist services, who have done diddly squat to push for physician-led services over decades for m.e as far as I can see and their biopsychosocial narratives about people becoming sick through the own behaviour and getting better through their own efforts, deterred medical interest. I wonder who directed that question.

 

[Lou B Lou]

Here is the possible influence of the Sussex m.e group. We’ve got Sian Berry the green party , who should be one of our strongest allies and instead she’s calling for talking with BACME about specialist services, who have done diddly squat to push for physician-led services over decades for m.e as far as I can see and their biopsychosocial narratives about people becoming sick through the own behaviour and getting better through their own efforts, deterred medical interest. I wonder who directed that question.

See my post above. Not possible influence. Definite influence. Brighton/Sussex ME patients see our own MPs recruited for Sussex ME Society agendas from the minute they are elected into parliament.

 

[Lou B Lou]

And the Under Secretary of State for Public Health and Prevention praising the Sussex Society:

So both the MPs (Sian Berry) Commons Question AND the Under Secretary's Common Response appear to have been mediated by Colin Barton for his sham Patient group/Society.

35 Years + - Sussex & Kent ME/CFS Society

Colin Barton – Chairman Sussex & Kent ME/CFS Society marked it’s 30th anniversary during 2017. We were granted registered charity status in 2000 and have received support from the National Lottery. The charity became one of the most successful ME/CFS organisations in the UK and the chairman...

measussex.org.uk

Ashley Dalton MP, Parliamentary Under-Secretary of State (for Public Health and Prevention)

“I am impressed to read of Sussex and Kent ME/CFS Society’s work, including supporting people with fibromyalgia and long COVID. The government is aware of the devastating effect these conditions can have.”

.

 

[V.R.T.]

And the Under Secretary of State for Public Health and Prevention praising the Sussex Society:

So both the MPs (Sian Berry) Commons Question AND the Under Secretary's Common Response appear to have been mediated by Colin Barton for his sham Patient group/Society.

35 Years + - Sussex & Kent ME/CFS Society

Colin Barton – Chairman Sussex & Kent ME/CFS Society marked it’s 30th anniversary during 2017. We were granted registered charity status in 2000 and have received support from the National Lottery. The charity became one of the most successful ME/CFS organisations in the UK and the chairman...

measussex.org.uk

Ashley Dalton MP, Parliamentary Under-Secretary of State (for Public Health and Prevention)

“I am impressed to read of Sussex and Kent ME/CFS Society’s work, including supporting people with fibromyalgia and long COVID. The government is aware of the devastating effect these conditions can have.”

.

This is absolutely sickening. They've sewed up both sides of this 'debate'. It all seems so nice and cosy until you consider what these people have done. The cost of this catastrophic failure to provide any appropriate services for pwME. The research that hasnt happened because we have perfectly good treatments that we're just too ungrateful and neurotic to take advantage of. It certainly explains Ashley Dalton's utter uselessness on this issue.

I knew Caroline Lucas fell for Barton's bullshit but very disappointed to see Sian Berry has too. If I had the capacity right now to write something persuasive and not mad sounding, I might write to Zack Polanski and warn him about BACME, as they will surely be wanting to get him under their sway too. Although given his background as a hypnotist that might not be too tricky...

How do we counter this? I am genuinely concerned that even if there is a real breakthrough BACME and the Wessely school will use these connections to bury it politically so we do not get the services and research infrastructure we need.

I think a social media project collecting the testimonies of people who have been severely let down or worsened by these services, presented in short video format (insta reels, tiktok, youtube shorts length) could cut through with the public. I can't do it myself though. I'm too severe, because of the BPS approach. Sickest of ironies...

 

[Lou B Lou]

@V.R.T. - I'm sure that MEActionUK or/ Millions Missing did a very big survey on UK patients' experiences of the clinics. There was a very large document of quotes from the responders, a very useful resource. But I can't find the survey any more.

 

[V.R.T.]

@V.R.T. - I'm sure that MEActionUK or/ Millions Missing did a very big survey on UK patients' experiences of the clinics. There was a very large document of quotes from the responders, a very useful resource. But I can't find the survey any more.

That would be useful to have for future reference if anyone does find it!

 

[Sean]

How do we counter this? I am genuinely concerned that even if there is a real breakthrough BACME and the Wessely school will use these connections to bury it politically so we do not get the services and research infrastructure we need.

Or take the glory for it.

 

[V.R.T.]

Or take the glory for it.

And then use the publicity to get even more funding for services that don't help anybody!

 

[Cinders66]

Siân Berry Green Spokesperson (Crime and Policing), Green Spokesperson (Justice), Green Spokesperson (Transport), Green Spokesperson (Work and Pensions), Green Spokesperson (Culture, Media and Sport), Green Spokesperson (Democratic Standards)​

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.

• Tweet Share
• Hansard source(Citation: HC Deb, 20 October 2025, cW)

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

A stocktake of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services was concluded by NHS England in December 2024. Although not all integrated care boards responded to the survey, the stocktake did show variation in models across England.

Departmental officials will continue to work with the British Association of Clinicians in ME/CFS on the implementation of the final ME/CFS delivery plan, which was published in July.

Interesting the words "variation in models" given that we have that heritage study for their benefit, being held up as m.e money which was supposed to "explore models".

This is absolutely sickening. They've sewed up both sides of this 'debate'. It all seems so nice and cosy until you consider what these people have done. The cost of this catastrophic failure to provide any appropriate services for pwME. The research that hasnt happened because we have perfectly good treatments that we're just too ungrateful and neurotic to take advantage of. It certainly explains Ashley Dalton's utter uselessness on this issue.

I knew Caroline Lucas fell for Barton's bullshit but very disappointed to see Sian Berry has too. If I had the capacity right now to write something persuasive and not mad sounding, I might write to Zack Polanski and warn him about BACME, as they will surely be wanting to get him under their sway too. Although given his background as a hypnotist that might not be too tricky...

How do we counter this? I am genuinely concerned that even if there is a real breakthrough BACME and the Wessely school will use these connections to bury it politically so we do not get the services and research infrastructure we need.

I think a social media project collecting the testimonies of people who have been severely let down or worsened by these services, presented in short video format (insta reels, tiktok, youtube shorts length) could cut through with the public. I can't do it myself though. I'm too severe, because of the BPS approach. Sickest of ironies...

i think targeting the radical and more media active green leader pronto is worthwhile , trying to get m.e adopted as a cause - I regard it as a worse scandal than the PO or waspi women - & we should be building up support.
+ the Lib Dem’s are onside, & were the only ones to lead parliamentary challenge to the DHSC delivery plan.

I don’t think i Support Action for ME & the APPG and an idea of seeking cross party consensus if , by default , it means diluting ambition to the lowest common denominator of agreement & the Labour gvt are choosing to “same old” this area so an irrelevance imo.

I think public truth telling, in the form you describe & working independently, instead of expecting others to represent us, is the way to go, where there is frustration, but as you say we are very sick which impedes actively doing much …..

 

[Lou B Lou]

That would be useful to have for future reference if anyone does find it!

The survey by MEActionUK 'Your experience of ME services' was submitted as evidence to NICE.


NICE MEAction Survey of ME/CFS Clinics Patient Experiences

chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/https://web.archive.org/web/20210203203506id_/https://www.meaction.net/wp-content/uploads/2019/10/Appendix-6-Your-experience-of-ME-services-report-by-MEAction-UK.pdf


SURVEY FINDS U.K. SPECIALIST M.E. SERVICES NOT FIT FOR PURPOSE

'MEAction UK survey of 1900 people with ME found that UK specialist ME services are not fit for purpose. 83.3% of respondents felt their local service should be adapted or closed and rebuilt with patient input. The results were submitted to NICE as part of our response to their call for evidence'

.

That would be useful to have for future reference if anyone does find it!

 

[Lou B Lou]

@Cinders66 wrote:
' .... + the Lib Dem’s are onside, & were the only ones to lead parliamentary challenge to the DHSC delivery plan.'

Unfortunately since then Ed Davey has lashed out about sickness/disability benefits, alleging ".. quite a lot of fraud'.


Disability News Service (September 2025):
'Liberal Democrat leader Sir Ed Davey has whipped up hostility towards disabled people by suggesting there is widespread fraud among claimants of personal independence payment (PIP), despite his own work and pensions spokesperson linking similar unfounded attacks to the far right.

In an interview with Times Radio at the Liberal Democrat party conference in Bournemouth, Sir Ed suggested the reduction in face-to-face assessments had led to “quite a lot of fraud” among the recent increase in PIP claimants since the start of the pandemic.

But the latest figures from the Department for Work and Pensions (DWP) estimate that just 0.4 per cent of PIP spending in 2024-25 was due to fraud, while the previous year’s estimate had been zero per cent.

Despite these facts, Sir Ed said: “There’s a real suggestion in those numbers, by the way the Conservatives managed the system, that there’s quite a lot of fraud there and surely everyone can agree we should go after the fraud to make sure that people who need the benefits that people who are really disabled can still get them.”

Davey stirs up hostility towards disabled claimants, as Lib Dem spokesperson links similar attacks to far right

Liberal Democrat leader Sir Ed Davey has whipped up hostility towards disabled people by suggesting there is widespread fraud among claimants of personal independence payment (PIP), despite his own…

www.disabilitynewsservice.com

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[Tao Fogger]

Andrew Snowden Opposition Assistant Whip (Commons)​

To ask the Secretary of State for Health and Social Care, whether his Department has commissioned research on the incidence of postural tachycardia syndrome in patients with long covid.

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• Hansard source(Citation: HC Deb, 21 October 2025, cW)

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

We are investing in additional capacity to deliver appointments to help bring waiting lists and times down. The Elective Reform Plan, published in January 2025, sets out the specific productivity and reform efforts needed to return to the constitutional standard, that 92% of patients to wait no longer than 18 weeks from referral to treatment by March 2029.

Additionally, the shifts outlined in our 10-Year Health Plan will free up hospital-based consultants’ time by shifting care from hospitals to communities, utilising digital technology to reduce administrative burdens, and promoting prevention to reduce the onset and severity of conditions that lead to hospital admissions. This includes expanding community-based services, employing artificial intelligence for productivity, developing integrated neighbourhood health teams, and investing in digital tools and data. These shifts will allow specialists to focus on more complex cases of postural tachycardia syndrome (PoTS), enabling earlier identification and management, and improved patient outcomes.

The Department funds health and care research through the National Institute for Health and Care Research (NIHR). The NIHR has supported a broad portfolio of research into long COVID, including understanding the links between long COVID and PoTS. The £3.35 million LOng COvid Multidisciplinary consortium: Optimising Treatments and servIces acrOss the NHS, or LOCOMOTION, study confirmed that people with long COVID are more likely than others to have orthostatic intolerance, and that these problems are relatively common.