Search results

Would it be an idea to ask Chris if this is the case? It seems like a very important point to get clear on.

This is what Chris Ponting said when I asked him about HLA a few weeks ago, thought it might be relevant.

'A persistent immune or inflammatory response has been proposed […] However, an alternative explanation would be […] A generalized dysfunction of unmyelinated somatosensory and sympathetic nerve fibers would lead to widespread symptoms because of their almost universal body distribution, leading...

Well this isn't going to be good. Seen speculation that it's going to be paracetamol they blame. For some bizarre reason.

This is needlessly vague and plays into the BPS people's hands. 'Oh we already have a specialist NHS service of bullshit and stealth GET no need to worry.' We need a specialist physician led service with home visits and trained nurses to do blood draws and the like. Why on earth could they not...

I think it would be really good if some labs could look at CD38 so we have a better understanding of the evidence base by the time of the results. I think Chris Armstrong posted that he planned to do some more work in that area the other day.

Is there any reason to think they would be helpful in terms of their mechnism? Or is it just that they are used for multiple myeloma?

I mean, they do say that the study is funded by patients and patient organisations, so maybe a patient org has stepped up and done the right thing. But it could be the ME funds original 4 million NOK. I really hope it's true but I'm not counting my chickens until it's confirmed.

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...