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Wow that is absolutely meaningless obscurantist babble.

Wallitt:

So they received a critical response from experts in post viral illness a month after the intermural study came out and sat on it for a year and a half. Totally not suspicious at all...

Can you explain what you mean by common target in this context?

Do you mean this thread? That sounds like a good idea. Maybe this discussion should migrate over to that thread, where we could all discuss what the 'target' project(s) should be and how to facilitate this.

My understanding is that PRIME is partly about bringing in experts in the genes implicated in DecodeME. So they can investigate those areas. Of course we don't know for sure that the imputed genes are the ones involved but I don't think that means we need to sit around for two or three years...

Does there need to be a study that is 'proof of concept' in terms of this fundraising model? I.e. find an important/well designed proposal floating around that hasn't been funded and fundraise for it through a charity? Even better if its one by someone newer to the field in a way. Then we can...

Oh excellent I knew about the genetic and questionaire data but not about the contacting participants part (I thought that was just for future Edinburgh studies).

In terms of patient selection surely the best place for a researcher to start would be by contacting DecodeME participants local to their institution? And then screening them more thoroughly themselves? If they were somehow aligned with Edinburgh (e.g. through PRIME) then perhaps they could...

Yes I was thinking along those sorts of lines too. And in a lot of ways those sorts of studies would have a quite compelling fundraising hook. That's reassuring to hear. Are things falling into place on that front then or is there more that needs to be done?

Should somebody reach out to this researcher? Seems like an ideal candidate to get interested in MECFS...

Are there any smaller studies following on from DecodeME or other important stuff that could benefit from fundraising?

Yes although that is in will-it-wont-it limbo with government funding. Unless anyone has an update? How long do we think until we know whats happening there. It's hard to effectively fundraise for something when you don't know how much you're asking for.

So we need to link up with researchers and charities and figure out what important questions we need answers to that researchers are struggling to get funding to study? And design individual campaigns fundraising specifically for those studies? Maybe it could work for a couple of projects if...

Thats very disappointing about the MRC if it turns out to be the case. I was hoping JE was told correctly about a change in attitude. Perhaps it is a good idea to prepare for the worst then? Have a serious try to scale up fundraising efforts. Surely the worst that can happen if we succeed is...

Maybe some findings from WILCO? He's a STIMULATE ICP investigator right? This is happening on my birthday so I probably won't be watching but I'm quite interested in what Altmann has to say.

70 in person and 50 online tickets seems tiny to me, am I wrong?

This would seem to be more evidence against viral persistance driving symptoms then. If only we could get the US LC research lot to listen... But were these found during autopsies of the mice and/or in tissues that can't safely be tested in live humans?

I have many symptoms of SFN but have never had a biopsy

I also appreciated the way he framed it as 'we need to accelerate ME research towards effective treatments and diagnostics'. I think so much emphasis is often put by researchers on biomarkers and tests that you question whether they understand what the real priority is. Whereas when they...