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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...

Iirc Chris also said they would meet once a week? It sounds like exactly what ME research in this country needs. Some unity and direction. I'm particularly excited by the possibility of new specialists in DecodeME gene areas getting involved.

Sounds like if it's CD38 inhibition rather than plasma cell depletion we want this drug might be more effective than daratumumab?

Interesting! If this is the case then the Scheibenbogen trial will be worth keeping an eye on if it goes ahead. I hope they measure NK cells before treatment too.

Besides SequenceME, is it possible/practical for someone to do a study focussing on all or some of these genes? My understanding is that you don't need anywhere near as many participants for statistical significance when you are looking at a specific gene rather than at the genome as a whole. It...

Isnt that the one thats in Polar Bear livers thats toxic to humans? Answered my own question - yes, in high quantities. https://en.wikipedia.org/wiki/Hypervitaminosis_A

Does the anti CD38 drug Scheibenbogen is using also require NK cells to work? Do you have any speculations about what sort of approach the other subgroup might need in this scenario?

I assume this stuff will be investigated after dara p2 if it succeeds but that is a way off. Personally I wish they could have gone straight to a larger phase 3 with mostly high nk cell patients but subgroups of artificially raised and low NK cell patients. If there trial is postive and it was...

Every time someone does this it plays into BPS hands! Can't researchers understand that by constantly announcing they have found a biomarker based on premature and in this case poorly conducted findings it delegitamises them AND us in the eyes of the medical establishment.

If they truly believe the drug helped them, and the drug company are refusing to release the data, what else can they do but call for another trial?