MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

Eleanor said:
Does that mean SequenceME has been turned down for funding by MRC, or never applied?
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It seems pretty clear from Sonya's talk that the MRC is not expected to fund SequenceME. That is inexcusable if so. My local genetics friend said that funding it is a no-brainer. But the MRC never funded a whole lot of things it should have. They are an establishment club who follow on, not a vanguard.
 
Jonathan Edwards said:
It seems pretty clear from Sonya's talk that the MRC is not expected to fund SequenceME. That is inexcusable if so. My local genetics friend said that funding it is a no-brainer.
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It just seems we are in bizarro-world when the MRC co-hosts a showcase intended in part to "Highlight the bespoke support available from NIHR and MRC for researchers in preparing applications", including representation from an organisation which can't apply to the MRC to get funding for its flagship research having been given to understand that such a proposal would inevitably be turned down!
 
Jonathan Edwards said:
It seems pretty clear from Sonya's talk that the MRC is not expected to fund SequenceME. That is inexcusable if so. My local genetics friend said that funding it is a no-brainer. But the MRC never funded a whole lot of things it should have. They are an establishment club who follow on, not a vanguard.
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For 30+ years the MRC has told us that the lack of high-quality research proposals is the reason it hasn’t funded more biomedical ME/CFS research. I think this confirms that that is not true. There may have been a lack of high-quality applications but the problems clearly run deeper than that.
 
There’s a document up about this now

I haven’t read the whole thing but this from the closing ‘Next Steps’ seems a bold claim when SequenceME is sitting there ready to go without receiving funding
The NIHR and MRC remain committed to advancing research into post-acute
infection conditions, including ME/CFS and long COVID, to improve treatment and
management of these conditions. Building on discussions from this research
showcase, both funders will continue to work to stimulate further vital research in this
area
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Strategy Document

NIHR/MRC post-infection conditions research showcase - current, new and future perspectives in ME/CFS and long COVID research​

National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC)
Published 10 Feb 2026 (https://doi.org/10.3310/nihropenres.1115288.1)
Author Affiliations

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Report
The National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) co-hosted a research showcase to discuss and explore the ongoing research in the fields of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID at the Royal College of Physicians, London on 6th November 2025.

Award ID(s)
Not Applicable

Competing Interests
No competing interests were disclosed

Keywords
NIHR, MRC, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), long COVID

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hotblack said:
There’s a document up about this now

I haven’t read the whole thing but this from the closing ‘Next Steps’ seems a bold claim when SequenceME is sitting there ready to go without receiving funding
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Why is the governments approach to MECFS just to lie through their f-king teeth and say they are doing things they have no intention of doing?

Funding SequenceME made so much sense. Yet somehow they think they can refuse to do it, or provide any severe ME services or care, and still smile and act like they want to help. It's sick.
 
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