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I agree, I really think this is a study that people would be willing to fund, and I think a site in English and a well corordinated international fundraising effort would raise the funds fairly swiftly.

I think they're now planning to do 9000 from DecodeME and then collect 9000 from Long Covid patients. So cost wise probably around the same for sequencing but then you've got to factor in collecting the LC samples...

So thats what I heard, but yesterday(?) someone told me between 8 and 20 million. I don't know which is right, my bad.

This is a very good question and I would very much like to know the answer.

I guess it was probably an arbitrary distinction. But SequenceME is projected to cost between £8 and 20 million, whereas this costs 22 million nok which is around 1.6 million, so a much smaller target.

D.J. Nutt is Professor David Nutt, perhaps someone could contact him and ask about it?

Thanks, I've just donated too. Firefox couldn't translate the page so had to switch to Chrome *shudder*. Could we at S4ME get one going? We are an international forum after all. Of course we would have to be careful not to look like we favour the hypothesis behind dara or that we are promising...

I have scanned the rest of the thread, and am wondering if there has been any international fund raising efforts? Can international people donate through the above link? Am i remembering right there was some reason why they couldn't? I find it quite surprising that a major international...

I agree with all of this, but if funding from government bodies is incomplete or not forthcoming then I think a patient funded or partly patient funded SequenceME is better than it not happening at all. But because we don't know the funding situation and it may not have been determined yet, we...

That's encouraging to hear. But as I've said, we don't know what the situation is right now in terms of how much they need. I think we need more certainty about how much we need for effective fundraising campaigning to be possible. And we certainly wouldn't want to raise huge amounts of money...

I think this is really important to bear in mind. You've expressed something that's been troubling me about these discussions lately very well. I hope all our evidential ducks line up soon. But people need help now, and its been said by JE and others that there might not be widespread belief...

I am popping back from my S4ME holiday to highlight the fact that in Jeroen Den Dunnen's talk, two of the subgroups groups of LC patients his team identified had markers of neuronal damage and elevated type 1 interferons respectively, which fits well with a couple of the hypotheses we've been...

Hi Chris, sincere thanks for all your hard work and advocacy on our behalf. Exciting to hear more analyses of the data are in the works! I was wondering if there was any sort of timeframe for the publication of the HLA analysis? And am curious whether the Manhattan plot published with the...

I don't think ten years is a rational estimate in the event a drug is trialed now and found to work, which is what CS was referring to. And I think it could be significantly sooner if drug targets are found. I certainly don't think we should get comfortable with the idea it will take ten years...

The 10-20 years is based on how long it takes to develop a new drug from scratch without any acceleration in terms of trials. It is banded around a lot of places like the cfs subreddit, a contingent of which seems to revel in creating a sense of utter hopelessness in sufferers. From what I...

I believe Tronstadt is part of Fluge and Mella's team so I assume he feels the immune system links suggested support their Daratumumab etc trials in some way. I tried to watch his recent talk on the mechanisms he (and I assume F&M) currently believe underlie ME/CFS but couldn't follow it very...

Yes the other night when I crashed badly my partner commented on the fact my hands had gone freezing cold, and its far from the first time that's happened.

I get extremely feverish, with all the typical symptoms except a significantly raised temperature. Body boiling hot to the touch (confirmed by others) and everything. IIrc temp has been slightly raised once or twice but nothing comparable to how abysmal I feel. That said wasn't the information...

I wonder what mechinisms he was referring to here. A new line of attack is emerging...brain and nervous system equals psychosomatic. Frustrating but predicable. Are they seriously that scientifically illiterate or are they just frighteningly okay with brazenly lying to the public?

How does this square with the practicalities of basic science and clinical trials though? Are there experiments that could prove this model, or drugs that could treat it? And both JE and Jnmaucich have said that the immune pathology that could underlie this might well not be detectable in the...