UK House of Lords/ House of Commons Questions

Photo of Tom MorrisonTom Morrison Liberal Democrat Deputy Chief Whip​

To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years.

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

The Department funds research through the National Institute for Health and Care Research (NIHR). Between the 2019/20 and 2023/24 financial years the NIHR committed approximately £3.7 million to research projects and programmes on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The NIHR, alongside other Government research funders, remains committed to funding high-quality research to understand the causes, consequences, and treatment for ME/CFS.

Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve the evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including ME/CFS and long COVID, later this year to stimulate further research in this field.

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.
 
This is specific to NIHR. However, Is there a certain code for these questions?
Could they be asked to quantify the amounts given to research into dementia, Parkinson’s and ME/CFS over the past 5 years, (presumably around £540m, £75m & about £6m): & explain how the small gestures made in the DHSC delivery plan can possibly be considered enough to rapidly ramp up research funded & interest in an incredibly disabling illness, unfairly stigmatised and neglected for years?
 
Even if it was 3.7 million (which I doubt I looked before I can't find evidence of anything past the known 3 projects of a bit over 2 million) that is still less than £2 a sufferer per year. Its pretty dreadful funding rate, not something to be proudly proclaiming compared to what is spent on other diseases.
 
BrightCandle said:
Even if it was 3.7 million (which I doubt I looked before I can't find evidence of anything past the known 3 projects of a bit over 2 million) that is still less than £2 a sufferer per year. Its pretty dreadful funding rate, not something to be proudly proclaiming compared to what is spent on other diseases.
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It's when the figures are put alongside others that they scream out ridiculous, which is why I'd like to see a minister having to do that and still carry on with the "we are doing our job & duty to advcance research properly & fairly, as your government and holders of the purse for medical funding", attitude. Edit. You can’t agree that to find treatments in a reasonable Time frame for the admittedly more costly dementia, there needs to be £160m / year and then turn to the m.e community and pretend that £1m is really good vs condemning people to a life in bed.
 
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