UK House of Lords/ House of Commons Questions

Myalgic encephalomyelitis research and treatment
EDM (Early Day Motion) 31: tabled on 09 November 2023
Tabled in the 2023-24 session.

This motion has been signed by 4 Members. It has not yet had any amendments submitted.

Motion text
This House commends current research being conducted by the Quadram Institute on the Norwich Research Park that builds on recent evidence that conditions like myalgic encephalomyelitis (ME), and Long Covid, have a basis in the immune system; notes that ME (sometimes known as ME/CFS) is a severely debilitating condition thought to affect up to 250,000 people in the UK and that symptoms include widespread pain, extreme tiredness and an inability to concentrate and that the causes of ME are not known and there are no effective treatments; commends the funding provided by the charity Invest in ME Research to the Quadram Institute to run the only current clinical trial in the UK for ME; believes it is necessary to establish a Centre for ME Research, building on excellent biomedical research, to act as a hub for research and treatment of ME; and calls on the Government to support and promote such a specialist Centre to help develop effective treatments.

https://edm.parliament.uk/early-day-motion/61510/myalgic-encephalomyelitis-research-and-treatment

 

https://questions-statements.parliament.uk/written-questions/detail/2023-11-07/236

Chronic Fatigue Syndrome: Research
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Question for Department of Health and Social Care
UIN 236, tabled on 7 November 2023

Question

Daniel Zeichner
Labour
Cambridge
Commons
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that funding for biomedical research into myalgic encephalomyelitis (ME) is adequate; and whether he plans to take steps to establish a centre of excellence on ME to (a) promote understanding of and (b) develop effective treatments for that illness.

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Answer

Andrew Stephenson
Conservative
Pendle
Commons
Answered on
17 November 2023

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided around £4.4 million of programme funding for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011.

Through the NIHR, the Department has co-funded, with the Medical Research Council (MRC) a £3.2 million study called DecodeME into the genetic underpinning of ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease and therefore contribute to the research base on diagnostic tests and targeted treatments for ME/CFS.

The Department and the NIHR has no specific plans to establish a centre of excellence for ME research. The NIHR welcomes funding applications for research into any aspect of human health, including biomedical research for 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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

 

Daniel Zeichner Shadow Minister (Environment, Food and Rural Affairs)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that funding for biomedical research into myalgic encephalomyelitis (ME) is adequate; and whether he plans to take steps to establish a centre of excellence on ME to (a) promote understanding of and (b) develop effective treatments for that illness.

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• Hansard source(Citation: HC Deb, 17 November 2023, cW)

Andrew Stephenson Assistant Whip, Government Whip, Lord Commissioner of HM Treasury[/paste:font]
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided around £4.4 million of programme funding for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011.

Through the NIHR, the Department has co-funded, with the Medical Research Council (MRC) a £3.2 million study called DecodeME into the genetic underpinning of ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease and therefore contribute to the research base on diagnostic tests and targeted treatments for ME/CFS.

The Department and the NIHR has no specific plans to establish a centre of excellence for ME research. The NIHR welcomes funding applications for research into any aspect of human health, including biomedical research for 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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

 

Dragging my cold dead brain to answer this:

Stephensen has 'misled the house' in the first para of his reply. The question clearly identifies "biomedical research" but the NIHR has not prior to DecodeME, funded any biomed - thread here: https://www.s4me.info/threads/funding-of-me-cfs-research-in-the-uk.2533/#post-406653 - see also following posts for details, total funding since 2011 excluding DecodeME is ££4,982,033* not £4.4mn, all of which has gone to psych studies.

I've emailed Daniel Zeichner with the relevant figues, however I'm not a Constituent, so if anyone does live in Cambridge and can contact Zeichner as their MP, or if anyone feels like passing this on to the MEA or other orgs, that would good.

edit to add* difference between the figure here and the linked thread is two studied funded before 2011.

further edit to make readable.

 

maybe someone at the Cambridge ME support group?
(they protested recently and its quite likely the question came from them
Cambridge ME protest calls for better medical training across UK | Science for ME (s4me.info)).
Cambridge M.E. Support Group, CBME – Welcome to the CBME website. We are a voluntary group for anyone living with ME in Cambridgeshire (cambridgeme.org.uk)

 

Source: UK House of Commons
Date: November 20, 2023
URL:
https://questions-statements.parliament.uk/written-questions/detail/2023-11-10/1349


[Written Answers]

Chronic Fatigue Syndrome: Coronavirus
-------------------------------------

Jim Shannon

To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the likelihood of a connection between myalgic encephomyalitis and long covid.


Maria Caulfield

No assessment has been made. Whilst myalgic encephalomyelitis/chronic
fatigue syndrome (ME/CFS) and long COVID are similar in presentation, they are distinct conditions.

The National Institute for Health and Care Excellence currently recommends separate pathways for the assessment, treatment, and management of ME/CFS and the long-term effects of COVID-19.

 

Jim Shannon is a bit of a star. When we lived in NI he was our local councillor and MLA. If anyone wanted anything done locally, it was Jim they went to, even though we had four other MLAs representing our area as well.

Many years ago I had to take my young sons to a Remembrance service at a local church, I think because they were in Scouting (Beaver/Squirrel age). We turned up late as we always did (I blame the ME but it could just be that I always turn up late) and had to stand on a naughty step as all the Ards aldermen processed past in their moth-bitten furs and gold chains.

No one is as aware of their own dignity as an Ards alderman in full sail, so they took it in turn to scowl at us as they passed, cementing my status in the eyes of the rest of the congregation as an irresponsible mother. All except Jim, who saw the boys and pulled a big, silly face to make them laugh. I could have hugged him – a genuinely lovely man, whatever you think of his politics.

 

Agree @Frith Jim Shannon is incredible. I’ve sat in his office (while waiting for my appointment with him) and seen what goes on. He’s a busy man, with time for everyone.

 

Kerry McCarthy Shadow Minister (Climate Change and Net Zero)
To ask the Secretary of State for Health and Social Care, what assessment she has made of the adequacy of financial support for medical research into post-viral conditions.

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• Hansard source(Citation: HC Deb, 21 November 2023, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
The Department funds research through the National Institute for Health and Care Research (NIHR). In recent years, the NIHR has made major strategic investments in long COVID and myalgic encephalomyelitis (also known as chronic fatigue syndrome) and is exploring additional research in these areas. No specific assessment has been made of the adequacy of financial support for medical research into post-viral conditions as a whole.

The NIHR welcomes funding applications for research into any aspect of human health, including post-viral conditions. These applications are subject to peer review and judged through 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. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

 

John Hayes Conservative, South Holland and The Deepings
To ask the Secretary of State for Health and Social Care, when she plans to publish the final myalgic encephalomyelitis delivery plan.

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• Hansard source(Citation: HC Deb, 21 November 2023, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
The Government will respond to its consultation on the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome and publish the final Plan in due course.

 

Put another way, the more researchers putting in applications for a disease area, on average the more funded studies there will be for a disease.

 

Baroness Scott of Needham Market Deputy Chairman of Committees
To ask His Majesty's Government what steps they are taking to (1) ensure people with myalgic encephalomyelitis (ME) have access to specialist ME/chronic fatigue syndrome services, and (2) increase funding available for such services.

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• Hansard source(Citation: HL Deb, 8 December 2023, cW)

Baroness Scott of Needham Market Deputy Chairman of Committees[/paste:font]
To ask His Majesty's Government what assessment they have made of the adequacy of myalgic encephalomyelitis/chronic fatigue syndrome services commissioned by (1) Norfolk and Waveney, and (2) Suffolk and North East Essex, Integrated Care Board.

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• Hansard source(Citation: HL Deb, 8 December 2023, cW)

Lord Markham The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) services that meet the needs of their population subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance such as the National Institute for Health and Care Excellence guidance on ME/CFS diagnosis and management, published in October 2021. A copy of the guidance is attached.

The Government has been consulting on ‘My Full Reality’, the cross-Government interim delivery plan on ME/CFS, which seeks to improve the experiences and outcomes of people living with this condition. The plan contains a series of actions to improve access to specialist ME/CFS services. The final plan will be published in due course.

The Government has made no assessment of the ME/CFS services commissioned by Norfolk and Waveney, and Suffolk and North East Essex ICBs.

Attachment (pdf, 539.7KB)

 

Rozz Scott is our ali.....

 

Not true! DHSC enabled BACME Survey.....
That reached out and encompassed Suffolk and Waveney ICS s

 

I think we need a response to both the NHS and the BACME understanding of ME to Barroness Scott. She needs to undeniable and very public support of those in the community?

 

A few thoughts about the questions put to Lord Markham. Sadly this shows quite clearly the hidden truths of the situation?


Due to the perpetuated stigma by the specialised services, which has constantly brought about the lack of duty of candour or informed consent due to not explaining clearly the impact of activity on PEM. What other diseases has never been given biomedical research and only CBT and GET as treatments?


It cannot be right to ask the ME community to trust services and visit them? They are in fact the greatest threat to safeguarding those in most need. You only have to read the information from the lived experience to understand the harm they are capable of.


Both BACME and NHS website perpetuate misinformation and cloud the reality with words such as fatigue. Fatigue is like calling Alzheimer’s just forgetfulness. Engaging with such professionals will never give the correct training, understanding or stop the stigma.


DHSC enabled BACME; to do a survey of the services in the Suffolk and Waveney area, showing clearly, the way professionals and the public are being misled by such surveys without direct engagement. The engagement by NHS UK and the information on the lived experience should be open to the public and viewed by the ME community who took great care and time to engage. The known difficulties that we have seen in the past and just recently with the coroner should also be part of the information gathered and explored.


There is a reason why Post Exertional Malaise (PEM) is never used at the top of all information given out by organisations employed by the NHS. Fatigue is used instead of PEM against all the voices of the Millions Missing, the research findings and from the Royal Free Hospital. Fatigue should never be used as a symptom or explanation and PEM should be explained fully to safeguard health of those with ME, so why is it not fully explained on the favored websites and that the public should be able to trust.

The covid inquiry is asking for the lived experience to be documented as Every Story Counts. I have written my own experiences of the harm I have seen perpetuated by the misinformation about ME and Gulf War Syndrome and transferred to those with Long Covid. I would hope that the APPG would do the same for the ME community because to learn lessons has to be about the ability in denying ME, leading to the Government and policy makers not recognising the risks.


The covid enquiry to me clearly points out the problems through the epidemic of the mistakes and failings made - an ability to hide the facts while looking as if things are being done. The reality is hidden just like in The Hitchhiker’s Guide to the Galaxy, the truth is in the public domain, if you are brave enough to enter the room marked not with ‘Beware of the Leopard’ from the guide but ‘Beware of Simon Wessley’ in the ME community.


“But the plans were on display…”
“On display? I eventually had to go down to the cellar to find them.”
“That’s the display department.”
“With a flashlight.”
“Ah, well, the lights had probably gone.”
“So had the stairs.”
“But look, you found the notice, didn’t you?”
“Yes,” said Arthur, “yes I did. It was on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying ‘Beware of the Leopard.”

― Douglas Adams, The Hitchhiker's Guide to the Galaxy

There is a reason why Post Exertional Malaise is never used in government literature and fatigue is in its place against all the voices of the Millions missing, it is to dismiss the long term need for health and care and the failings through the Covid pandemic. It is a word that legally safeguards the Government and those at the top of the NHS .

 

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what assessment she has made of the potential merits of (a) improving and (b) adapting the SNOMED CT classification system in primary care when diagnosing suspected myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 15 December 2023, cW)

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, if she will make an estimate of the number of patients with suspected myalgic encephalomyelitis that have been (a) misdiagnosed and (b) missed due to the SNOMED CT classification system in primary care.

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• Hansard source(Citation: HC Deb, 15 December 2023, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
NHS England has not undertaken an assessment of the coding for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Whilst we are unable to estimate the numbers of patients misdiagnosed or missed, the National Institute for Health and Care Excellence guideline NG206 estimates that there are over 250,000 people in England and Wales with ME/CFS. The guideline is available at the following link:

https://www.nice.org.uk/guidance/ng206

 

Sharon Hodgson Chair, Finance Committee (Commons), Chair, Finance Committee (Commons)
To ask the Secretary of State for Health and Social Care, what steps she has taken to ensure that the SNOMED CT classification system used by GPs in primary care is (a) adequate and (b) used consistently for diagnosing myalgic encephalomyelitis.

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)
The Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT) is the structured clinical vocabulary for use in an electronic health record. It is a contractual requirement for all National Health Service healthcare providers in England to use SNOMED CT for capturing clinical terms, including diagnoses, within electronic patient record systems.

Within SNOMED CT, all content for myalgic encephalomyelitis and chronic fatigue syndrome is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners.

Updates to the United Kingdom’s edition of SNOMED CT are made by NHS England, with any user being able to submit requests for new or changed concepts and codes, via a central portal.

 

Sharon Hodgson Chair, Finance Committee (Commons), Chair, Finance Committee (Commons)
To ask the Secretary of State for Health and Social Care, what progress her Department has made on the final delivery plan for ME/CFS.

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• Hansard source(Citation: HC Deb, 11 March 2024, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
We have been consulting on My Full Reality, the cross-government interim delivery plan on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), which seeks to improve the experiences and outcomes of people living with this condition.

We are analysing the results of the consultation, and the views and experiences gathered through this consultation will be used to build a picture of how well the interim delivery plan identifies and meets the needs of the ME and CFS community, and to highlight any significant gaps where further action may be necessary. We will publish a summary of the consultation responses, which will inform the final delivery plan, in due course.