[UK, Organise Network] Open letter: A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform

InitialConditions · Apr 22, 2025

There is the opportunity to support this proposal by signing an open letter hosted by Organise Network, here: https://organise.network/actions/pe...campaign=505a358c-8a1d-48ff-b55c-847346df5fe9

The campaign/proposal has a thread here: https://www.s4me.info/threads/uk-a-...t-infectious-disease-research-platform.43778/

BrightCandle · Apr 22, 2025

Some of the ME Research UK quotes are damning
https://www.meresearch.org.uk/acade...behind-post-infectious-disease-platform-call/

MRC and NIHR have awarded £7.34m in ME/CFS research since 2013, including £3.2m to DecodeME. This is just £2.67 per person with ME (pwME) per year. Charities fund just under £2 per pwME per year. This compares with the UK’s annual spend of £74 per person on health research. Despite being at least twice as prevalent, ME/CFS receives approximately 20-times less research funding than multiple sclerosis.
ME/CFS’s annual cost to the UK economy is at least £3.3 billion; the cost of Long Covid to UK GDP is £1.5 billion annually.
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This low level of research funding is not commensurate with disease burden: UK ME/CFS prevalence is at least 250,000, with an estimated 63,000 people in the UK are so severely affected that they are house- bound or bed-bound, with little functional capacity, often needing 24-hour care.
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Pressure builds on the NIHR and the MRC to prove that ME/CFS research is indeed a priority and that regular highlighting of funding for the Priority Setting Partnership and decodeME is not merely a distraction from years of shameful neglect of biomedical research into ME/CFS.
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There are three main schools of thought about what has gone on. First, that within the MRC
the biopsychosocial model of ME/CFS is the current paradigm, leading referees and committee members to be chosen, probably unwittingly, to deliver a particular outcome (since psychosocial aspects colour the perception of the illness across the board, this would be no surprise). Second, that the MRC is simply a large stolid bureaucracy for which ME/CFS biomedical research has very low priority indeed given the other demand on its resources (£1.3 billion in 2008 for all types of research on all illnesses). Third, that something even more fishy is going on
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For once I feel like they aren't really pulling their punches, they are pointing at the systemic failures, the history of why no funding has been tried before and didn't work and all but accusing them of putting this intentionally on the back burner at the costs of 100s of thousands of lives. That last paragraph says the MRC is either BPS believing despite the evidence, completely incompetent or doing something worse.

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[UK, Organise Network] Open letter: A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform

InitialConditions Senior Member (Voting Rights)

BrightCandle Senior Member (Voting Rights)

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[UK, Organise Network] Open letter: A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform

InitialConditions Senior Member (Voting Rights)

BrightCandle Senior Member (Voting Rights)

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