UK House of Lords/ House of Commons Questions

it has been the brazen 2 tier efforts for m.e compared to long covid - ie don’t you worry, ofcourse we are taking long covid seriously and as proof of this ww point to the fact we have invested this much… for This program including clinical trials etc that has, to put it mildly taken the biscuit. .

 

Ben Maguire Liberal Democrat Shadow Attorney General
To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential merits of taking additional steps to improve the quality of life of people living with Myalgic Encephalomyelitis.

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• Hansard source(Citation: HC Deb, 24 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
We are committed to improving care and support for people with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.

We aim to publish the final ME/CFS delivery plan by the end of June 2025, where one of the key themes is bettering the lives of those living with this debilitating disease, as well as boosting research, and improving attitudes and education.

The responses to the interim delivery plan consultation, along with continued close engagement with the Government, National Health Service and external stakeholders, will inform the development of the final ME/CFS delivery plan, which will include actions to improve quality of life.

 

Munira Wilson Liberal Democrat Spokesperson (Education, Children and Families)
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people impacted by long covid in Twickenham constituency.

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• Hansard source(Citation: HC Deb, 28 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
Commissioning, service provision and staffing of long COVID services is the responsibility of local integrated care boards.

General practitioners (GPs) continue to act as the primary point of contact to ensure patients receive the appropriate advice and care. Patients experiencing symptoms of long COVID are advised to seek support from their GP in the usual way.

A directory of public health, community, and voluntary sector resources has been developed and is available to local GPs and primary care partners. This directory enables healthcare professionals to signpost patients to a wide range of local support services that address the various impacts of long COVID. Further information on the support services available in the Twickenham constituency is available at the following link:

https://www.kingstonandrichmond.nhs.uk/patients-and-families/patient-leaflets/long-covid-information

At a national level, NHS England has also published commissioning guidance for post-COVID services, which sets out the principles of care for people with long COVID.

Between 2019/20 and 2023/24, through the National Institute for Health and Care Research and Medical Research Council, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects 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 the effectiveness of clinical care.

 

Ben Maguire Liberal Democrat Shadow Attorney General
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the potential merits of funding research into the (a) causes of and (b) potential cures for Myalgic Encephalomyelitis.

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• Hansard source(Citation: HC Deb, 28 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
As indicated in the interim delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the Government is keen to increase and improve research in this area. ME/CFS can have a devastating effect on the lives of those who suffer from it, and those close to them, and research can hold the key to improving the quality of life for people with ME/CFS.

The Government funds ME/CFS research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC). Funding is available and we welcome funding applications for research into 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 areas, like ME/CFS, which are underserved by research, we work with other relevant funders to develop strategic solutions. For example, the MRC and NIHR co-funded the DecodeME project. The NIHR, Scottish Chief Scientist’s Office, and the MRC also funded the James Lind Alliance PSP for ME/CFS, facilitated by the charity Action for ME. We will outline further research actions as part of the Final Delivery Plan.

 

At least they've stopped using that line about how 'at worst', ME/CFS can make people 'feel' they aren't getting proper care. Perhaps someone's explained how insulting it was.

 

I told him roughly what it is like, at least once, as he's my local MP.

https://www.s4me.info/threads/uk-al...me-news-2020-onward.16996/page-17#post-604847