United Kingdom: Action for ME's PRIME project - research infrastructure

Dolphin

Dolphin

Senior Member (Voting Rights)
Copied from the AfME news thread
From Facebook:

We’re excited to announce our new research project ‘PRIME’ which will create infrastructure for ME research in the UK.

Starting in October 2025 PRIME is funded by the Medical Research Council. It’s a 4 year project between Action for ME, Edinburgh University and the Genetics Centre of Excellence.

What Will PRIME do?

Coordinate and engage researchers by creating at least 15 new research collaborations.

Strengthen International Research Networks by forming two global groups (consortias), one with a focus on genetics and the other on molecular biomarkers.

Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers) so that any research is created and shaped with lived experience at it’s centre.

PRIME is an exciting project but it’s just the beginning. We urgently need sustained public funding to make up for the neglect in research over the last decade.

Read more about PRIME on our website

www.actionforme.org.uk

New Research Project: PRIME – Building Infrastructure for Patients, Researchers and Industry for ME/CFS - Action for ME

New research project: PRIME - Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis (ME/CFS).
www.actionforme.org.uk www.actionforme.org.uk

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

 
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Dolphin said:
From Facebook:

We’re excited to announce our new research project ‘PRIME’ which will create infrastructure for ME research in the UK.

Starting in October 2025 PRIME is funded by the Medical Research Council. It’s a 4 year project between Action for ME, Edinburgh University and the Genetics Centre of Excellence.

What Will PRIME do?

Coordinate and engage researchers by creating at least 15 new research collaborations.

Strengthen International Research Networks by forming two global groups (consortias), one with a focus on genetics and the other on molecular biomarkers.

Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers) so that any research is created and shaped with lived experience at it’s centre.

PRIME is an exciting project but it’s just the beginning. We urgently need sustained public funding to make up for the neglect in research over the last decade.

Read more about PRIME on our website

www.actionforme.org.uk

New Research Project: PRIME – Building Infrastructure for Patients, Researchers and Industry for ME/CFS - Action for ME

New research project: PRIME - Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis (ME/CFS).
www.actionforme.org.uk www.actionforme.org.uk

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

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Well, a bit of good news for once. Probably worthy of its own thread. (Done)
 
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Aligns well with the Decode results being out by then, so hopefully it will start some very targeted (and fruitful :emoji_fingers_crossed:) research.

But seems like the main goal is collaboration and setting research goals. Isn't the main problem always research funding? Will it also be helfpul in that regard?
 
Jesse said:
But seems like the main goal is collaboration and setting research goals. Isn't the main problem always research funding? Will it also be helfpul in that regard?
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Funding is never the main problem. Having leads is the main problem. If there are leads there are credible projects. Those can get funded. I assume that if the MRC have backed this there will be funds for people to start building the next set of projects. This is exactly what is needed at this point.
 
InitialConditions said:
I was thinking this myself. I know with the PSP and DecodeME there are now established PPI members who I'm sure will want to continue working with Chris and co, but S4ME (members) should be involved where possible.
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As the press release says, "It’s a 4 year project between Action for ME, Edinburgh University and the Genetics Centre of Excellence.". The membership of the board of the Genetics Centre of Excellence, which includes me, can be seen here.

V.R.T. said:
Will there be a way for severe patients to participate?
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Severe patient representation for delivering the PRIME project comes from the board of the Genetics Centre of Excellence.

The aim of the PPI (Patient and Public Involvement) pool within PRIME is to have representatives of all severities available to match up with any project that is looking to include people with lived experience of ME/CFS. So, yes, severe patients will be able to be part of it, however what PRIME will be able to advise on but not control is how accessible each potential future project will be to involvement of severe patients.
 
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