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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...

Ever since ME onset the amount of clicking and cracking in joints increased significantly, most notably in wrists and elbows. my right elbow even started to sometimess freeze when my arm was half extended and i had to crack it out of that position. My toe joints also began to sporadically...

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...

Thank you, that's a reassuring answer, if a little cryptic in parts haha(I would love to know the significance of Thanksgiving!). Like Sasha I would be interested to know where these possible drug targets will arise from. I note that Chris Ponting said in his post publication interview with...

This is all very well thought out. And the neuron/synapse story fits very well with the symptoms I have experienced traditional models of ME do not easily explain. Tremors, fasculations, feelings of unquantifiable pain/sensitivity, freezing up etc... Some questions: Could the feedback loop be...

Now DecodeME is out and youre back on dry land @Jonathan Edwards, I'd like to pick your brain about a couple of things if I may. I thought this thread might be the appropriate venue. Firstly, you said a couple of months ago that DecodeME is one of a number of studies that should provide us with...

The research and hypotheses I am most interested in currently: The Edwards/Cambridge/Cliff Hypothesis, if it still stands post DecodeME, and whatever emerges like a phoenix from its ashes if it doesn't. @jnmaciuch's interest in type 1 interferons, and interferon as a possible lead generally...

The comment i was replying to

My original post in the main DecodeME thread that was referenced in Kiristar's post above, for reference.