SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

V.R.T. said:
So if the team got funding to analyse the DecodeME samples next week they would get started on it then?

(Obviously being a bit hyperbolic here, the point is whether they will wait the full two years to start if they get funding to analyse the DecodeME samples)
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Right there and then? No :)

But compared to many other research projects it would be virtually immediately - within a few months would be my guess.
 
hotblack said:
this could’ve been a lot quicker if the UK Government had funded it.
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Yes it's absolutely unforgivable. I can't even put into words how angry it makes me. And this project could have been a flagship program - as Chris Ponting says, it hasn't been done for any disease. It makes me sick that the MRC are so disdainful of ME/CFS they couldn't see the chance to blaze a trail in a way that could transform research into other diseases too.

I just hope there are people out there with more sense who can see the potential.
 
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I wonder if we're even a blip on the government's radar. The world's so complicated at the moment that governments mostly seem to be reacting to events rather than trying to steer them.

The research councils are arms-length bodies, so while the government might be able to apply directional pressure, it seems very unlikely they'd tell them what to fund. The MRC poo-bahs are dependent on government for their income, sure, but the government is heavily dependent on their expertise. Unless something happened to make it impossible, you'd imagine ministers would be inclined to respect their turf.

I'm actually optimistic, just not about the government or the MRC. Scientific breakthroughs often seem to happen despite the actions of governments, not because of them.
 
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Andy said:
From an email update:

As a valued supporter of our work, we are delighted to share the exciting news that we have secured funding for phase 1 of Sequence ME & Long Covid - the world’s largest long-read whole-genome study of any disease.
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This is great to hear although I share other people’s frustration about the lack of MRC funding.

Can anyone tell me how I can subscribe to the email updates that Andy received?
 
It's not much along the way, but sometimes this is all it needs for others to follow through, so that's very good news. Groundbreaking research almost never happens with easy, ample funding. It's almost always against the grain, treated with disdain by most scientists and operating on shoestring budgets.

The ground breaks with a small shovel, then a big one, and so on.
 
V.R.T. said:
Yeah, as I said above, it's a good sign they've announced this, as it would be very strange to anounce the start of a project this large if you thought there was no hope of securing the funding needed to actually do the study.
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I thought it was a great idea to segment various parts of the process, so that they can work on one while still fundraising for another. It'll probably save a good bit of time in the long run.

I'm hopeful it will get enough funding, even if it has to be pulled together piecemeal. New grant opportunities can arise every year.
 
forestglip said:
Great to hear.

It's interesting that only 9,000 of 15,000 pwME consented to further analysis. I understand if some don't want their data used by other research teams, but I would think that if they had the option, almost everyone would consent to further research by the same lab.
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I can’t remember what was asked and therefore what I selected - others might be the same in that if it was a very generic ‘other research’ I might have hesitated without reassuring it wasn’t going to be bps…
 
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