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This woman is incredibly dangerous. I don't think its a coincidence that her and Wessely are being elevated as the naysayers of 'overdiagnosis' now. It's quite frightening as an autistic person that we seem to be in the crosshairs both from the far right (RFK, Farage) and centre (Wessely, S...

Are there any important findings we think they should try to replicate in this study? To me this seems like a very expensive fishing expedition but perhaps there is something positive that will come from it.

Yes I think Nath has essentially been played by Wallitt and the interroception crew into legitimising their bullshit. This seems to be a disturbingly common thing in research and academia. Take over a rival discipline and remodel it in your image like an academic cuckoo . Happened to my...

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?