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My 'too good to be true' sense is worried the article might have got the numbers the wrong way round - that they have 5.5 million so far, not that they need 5.5 million. If not then this is fantastic news.

But if the bottleneck to recruitment is partly money and funding is sorted soon, surely they could be done by mid 2027? Maybe I'm being naive here. They are already well placed to recruit as you say.

Do you think they could be given a nudge in the right direction (e.g. funding dara and doing basic research following on clues from DecodeME etc) or are they a lost cause?

I sincerely hope you're right. 2029 is an eternity away. If it's money thats the limiter then we have to pull out all the stops to try and help F&M find the funds. I have a few ideas but I'm badly crashed at the moment. I would spearhead this initiative if I could. I'm feeling quite angry at my...

Scheibenbogen seems to be doggedly perservering nonetheless... Glad to see this isa trial though. CD38 is all the rage it seems.

Found the conversation

Yes, I used to be a big A Song of Ice and Fire fan (Game of Thrones books, for the less nerdy among us) and waiting for a treatment feels like waiting for The Winds of Winter to be published (the last book came out like 14 years ago)...except I can't live my life while I wait.

When we discussed this before there was some speculation of preliminary results in 2027 if they got enough funding, its either in this thread or the pilot one but can't look now. I think it was speculation about the recruitment being so long because they can't enroll as many patients...

I agree. I think perhaps the time is about right to push hard for this. If JE is right and more studies come out in the next little while, especially if they point to possible drug targets as he mentioned, we will have more evidence and more of a reason for establishing this kind if service even...

Some of us cant afford to wait that long though. If there's an off label drug that might improve my condition with results from a well run phase 2 and there's a decent chance I might be a responder, I'm going to try it. There's a very big risk I don't make it til the results of a subsequent...

Thank you! Really appreciated.

You seem quite knowledgeable about this stuff - would you be willing to email F&M about seeking funding from the NIH, EU and Khosla? I believe I found a contact email somewhere online. I think its not unlikely they applied for Horizon this year but who knows. They may have tried NIH and Khosla...

Disappointing. I wonder if this is true for the US NIH, who have all of that RECOVER money that they keep unwisely spending...

Also, I had an email from Bjorn at the ME fund. Essentially he said they were considering and taking advice on how to approach international fundraising and will follow up soon. No reply about Khosla, I think we should ask F&M or their team directly about that, and perhaps see what the OMF...

Almost certainly a stupid question - has anyone attempted to make the NIH or the UK funding bodies aware of the dara trial, thinking about it? Like, I am being deliberately naive here but why couldn't they fund it? Or even accelerate it? Apart from inertia and neglect etc.

I just found this on the HLA DQ wiki page - T Cells and graft vs host mentioned as well as autoimmunity. Seems potentially relevant if accurate. https://en.m.wikipedia.org/wiki/HLA-DQ The DQA1 page is interesting as well...

So you're saying this gene could potentially be more useful/relevant than the kind of HLA link that turned out to be a mirage? That's encouraging. I was a little concerned your pre DecodeME enthusiasm might have been heavily weighted by that HLA skyscraper. BTN2A2 does seem like it could fit...

Oh my god that thumbnail :eek::dead:

This seems like such a no brainer to me, I feel like any organisation serious about helping pwME/LC with NIH or even MRC/NIHR levels of resources would do this as a first port of call. Like 'obviously fast track Dara, and what else can we do?' And yet they're pissing around with GLP-1 and LDN...

If you have the capacity to expand on this at all I'd be really interested to hear about it.