UK House of Lords/ House of Commons Questions

Sharon Hodgson Labour, Washington and Gateshead South
To ask the Secretary of State for Health and Social Care, whether he plans to leverage international cooperation to accelerate (a) biomedical research and (b) treatments for (i) ME and (ii) long covid.

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• Hansard source(Citation: HC Deb, 21 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The National Institute for Health and Care Research (NIHR) is exploring opportunities with international research partners to foster research cooperation in areas of unmet need. For example, the Department of Health and Social Care has close links with the United States Department of Health and Human Services’ Office of Long COVID Research and Practice. The US’ Assistant Secretary for Health has discussed long COVID with the Chief Medical Officer, and the Department of Health and Social Care has also co-hosted a series of researcher exchanges between United Kingdom and US experts.

The NIHR and Medical Research Council are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome, and are actively exploring next steps for research in these areas.

 

That's an incomplete answer in connection with ME, also known as chronic fatigue syndrome in respect of leveraging international co-operation to accelerate (a) biomedical research and (b) treatments for (1) ME. It says nothing except 'unmet need'. They would argue that the 2021 NICE Guideline advises clinicians and it's for the ICBs to finance local services.

 

I did a search from 1 Oct and 30 Oct 2024. Here's the link. Find written questions and answers - Written questions, answers and statements - UK Parliament

 

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the adequacy of funding allocated to research into (a) myalgic encephalomyelitis and (b) long covid.

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• Hansard source(Citation: HC Deb, 28 October 2024, cW)

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of allocating more funding for research into (a) myalgic encephalomyelitis and (b) long covid.

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• Hansard source(Citation: HC Deb, 28 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The Department funds research in health and social care through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC) are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and are actively exploring next steps for research in these areas. This includes a roundtable I hosted on long COVID on 17 October 2024, which included discussion on how long COVID research is relevant to other post-viral syndromes and how to stimulate the research community to undertake future research.

Over the last five years, the NIHR has invested almost £2.3 million in research programme funding for ME/CFS. In addition, the NIHR and the MRC are also providing £3.2 million of co-funding towards the DecodeME study, which aims to understand if there is a genetic component to the condition, and in doing so increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

In the same period, the Government, through the NIHR and the MRC, has invested over £57 million in long COVID research, with almost £40 million of this through two specific research calls on long COVID. The NIHR specifically has invested £42.7 million towards research funding for long COVID. The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate clinical care.

The NIHR welcomes funding applications for research into any aspect of human health including ME/CFS and long COVID. 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. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

Publishing the consultation response and delivery plan for ME/CFS is a key priority for me.

 

Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, whether the delivery plan for ME/CFS will include measures to improve the safety of NHS care for patients with ME.

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• Hansard source(Citation: HC Deb, 29 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of ring-fencing biomedical research funding for ME.

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• Hansard source(Citation: HC Deb, 29 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, what assessment he has made with the Chancellor of the Exchequer of the potential impact of (a) ME and (b) long covid on economic growth.

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• Hansard source(Citation: HC Deb, 29 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

 

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, how codes are created for the SNOMED CT classification system in primary care.

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• Hansard source(Citation: HC Deb, 13 November 2024, cW)

John Martin McDonnell Labour, Hayes and Harlington[/paste:font]
To ask the Secretary of State for Health and Social Care, if he will ensure that a code is created for myalgic encephalomyelitis in the SNOMED CT classification system in primary care.

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• Hansard source(Citation: HC Deb, 13 November 2024, cW)

Karin Smyth Minister of State (Department of Health and Social Care)[/paste:font]
Codes are created for SNOMED CT by one of the following organisations:

- UK National Release Centre (NRC), hosted by the Technology and Information Standards (TIS) group in NHS England;

- SNOMED International, a not-for-profit organisation that owns, administers and develops SNOMED CT;

- any other NRC in any other SNOMED CT member country.

All requests made to NHS England must be compliant with the Editorial Policy and are processed in accordance with the SNOMED CT UK Edition Governance and Change Request Process. Concepts are added or changed in SNOMED CT by NHS England terminologists in line with International and UK Editorial Principles as defined by SNOMED International at the recommendation of international clinical advisory groups. The authoring process includes a technical quality assurance and peer review. Once the authoring process has been completed and quality assured, the files are published on the Terminology Reference data Update Distribution website.

There is currently a code in SNOMED CT for myalgic encephalomyelitis. The Fully Specified Name (FSN) is ‘Chronic fatigue syndrome (disorder)’. The FSN for a code is not intended for use by a clinician. Instead, a clinician is expected to make use of the synonyms for the code, which include myalgic encephalomyelitis.

Clinical systems usually display a ‘preferred term’, deemed to be the most clinically appropriate way of expressing a concept. The preferred term for the code ‘Chronic fatigue syndrome (disorder)’ is ‘Chronic fatigue syndrome’.

NHS England is reviewing the preferred term to align it with the current most clinically appropriate term for the UK, with the preferred term ‘ME/CFS - myalgic encephalomyelitis/ chronic fatigue syndrome’ being considered.