Webinar 2pm today (Friday 6 June 2025): Genetics Centre of Excellence (Edinburgh Ponting lab): update on recent research

Would it be worth reaching out to PrecisionLife and expressing some of our questions and concerns? Maybe invite them to come on here and discuss their work with us?

Or might that be something better left until LOCOME publishes?
 
V.R.T. said:
Agree with everything you say in your post, wanted to ask if you had heard these trials were already happening? I swear Sayoni Das said they would start after they had the locome results in a presentation i saw once.
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Maybe it's that, I think I've seen a presentation suggesting the trials would be underway by now. I thought I'd also read that they had sorted the genetic test they need to identify sub groups protesting.

But I haven't seen any confirmation that those trials are in progress – that was an assumption. If no one else has heard it, but it's probably not the case!
 
Simon M said:
Obviously, they are in a difficult situation as they're being funded by investors, who probably don't want to hear about the niceties of experiments and bumps along the road.
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Actually, having spent quite a lot of time advising investors on biotech, sensible investors do the due diligence and want to know the details - even if that means getting them from a third party.

And this webinar was clearly designed for the benefit of patients, who are entitled to have a presentation that they can understand.
 
Dolphin said:
Action for ME:
Recording available!
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This webinar was really well done. Ran smooth, clear concise presentations with actual data on a variety of projects with good information provided. And what a great way for Action to ME to share how the money that funded a Phd was put to use. I wish all charities communicated projects they are involved with like this.

There was an interesting tidbit at the end that implied that Precision Life might have pulled out of the ME field but a "fireside chat" about the disease to their full team by a person with ME was really helpful, as was the promise of the large dataset coming that is DecodeME which has well phenotyped data that they can actually trust.
 
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