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

Often there's a delay even if funding is agreed between the parties. Details need to be finalised, agreements signed—just getting two signatures on a sheet of A4 can take a fortnight, and longer if it has to go to a board.

There's also the PR side. The message has to be put together and agreed by both sides, and the timing of announcements within the news cycle might need to be considered.

I once got the nod on a grant nearly three months before it could be announced. Everyone in the loop knew, preparatory work was well underway, we just couldn't tell anyone. All the grants in the programme had to be announced at the same time, and ours was one of the first to go through committee and get approval.

That's an unnecessary long winded way of saying it's not always simple... :emoji_sweat_smile:
 
V.R.T. said:
@Jonathan Edwards did you learn anything about the SequenceME funding situation from your recent meeting with Sonya?
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Yes, but no details for public dissemination. I think Sonya would allow me to say that, as suspected, MRC has let us down, but sponsors are being engaged and that progress is being made. The strategy seems to be to break the project down into fundable segments, which makes sense to me.

If anyone has a billionaire donor knocking around please let Sonya know but in the meantime I think things will still happen, even if bit by bit.
 
Jonathan Edwards said:
Yes, but no details for public dissemination. I think Sonya would allow me to say that, as suspected, MRC has let us down, but sponsors are being engaged and that progress is being made. The strategy seems to be to break the project down into fundable segments, which makes sense to me.

If anyone has a billionaire donor knocking around please let Sonya know but in the meantime I think things will still happen, even if bit by bit.
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Do we have any idea of the total financing cost?
 
Jonathan Edwards said:
The figure floating around was £20M in total.
I think the rough idea is to break it up into £5M segments or thereabouts.
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It's expensive... the Germans should fund this basic research instead of wasting the decade's worth of money fighting infectious diseases on autoimmunity. Or we need a generous billionaire. Or rather, someone close to a billionaire who develops severe MECFS. Without that...
To summerize we will have to wait 5 years at least...
 
Such a waste, 20m is absolutely nothing in government budget terms. They say they want to cut costs on welfare and health and yet when given the opportunity to do so for a fraction of what they spend on those, they don’t. Complete failure. They spent vast sums over the pandemic, this is a rounding error.
 
V.R.T. said:
I am actually really relieved to hear things are progressing, even if segmentally.
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Yes, Sonya seemed upbeat. The discussions on here in the last week also give me hope that the puzzle of the DecodeME treasure map may not be quite as obscure as it first seemed. There is work to do but things seem to be making a bit more sense. Those Mumbai-with-kite-flying-competition plots must be intelligible if you know how to fly the kites. My friends at UCL seem to know exactly where the strings are for pain genes.
 
Jonathan Edwards said:
Yes, Sonya seemed upbeat. The discussions on here in the last week also give me hope that the puzzle of the DecodeME treasure map may not be quite as obscure as it first seemed. There is work to do but things seem to be making a bit more sense. Those Mumbai-with-kite-flying-competition plots must be intelligible if you know how to fly the kites. My friends at UCL seem to know exactly where the strings are for pain genes.
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Are you saying that we may not be far from a breakthrough in understanding the disease?
 
neophyte32 said:
Are you saying that we may not be far from a breakthrough in understanding the disease?
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I have been saying for about a year that I thought progress would soon be made, including suggesting that we might be further ahead by Christmas 2025. I am not disappointed. DecodeME has brought things into focus in a completely new way. I am prepared to predict that there will probably be further significant progress this year, but, as said previously, I think we are at a stage when it is impossible to predict where the next connecting clue will come from. It may take longer but it may already be staring us in the face.

For RA I remember a similar situation. I gave a presentation to the UCL Division of Medicine (in the days when it was a significant scientific venue) and while walking back to my office (I remember the pavement and the parked cars) I suddenly realised that I had solved the major missing piece of my puzzle without realising. Some time later I realised that the solution was on a slide I had made for a talk 18 years earlier. Important clues are lying around in heaps. We just need to see them. We now have loads of people who can see things like that, all talking to each other. Something must give.
 
hotblack said:
Such a waste, 20m is absolutely nothing in government budget terms. They say they want to cut costs on welfare and health and yet when given the opportunity to do so for a fraction of what they spend on those, they don’t. Complete failure. They spent vast sums over the pandemic, this is a rounding error.
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It's pathetic, isn't it. They will not commit to the one thing that will help both us and their short-sighted budgetary obsessions, which is a solid basic research program.

How many decades have been lost now because of this and the blocking of non-psych research by the psychs?
 
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