First in what will apparently be a series, with PWME Ben Howell interviewing a series of scientists from his bed via Skype. This one is an hour. I think it may be an OMF thing (it's on their YouTube channel) so is likely to focus on their contacts. Transcript here: https://docs.google.com/document/d/1QFtQsUo0mfg_xo-uNBhM2O7SYxXO90LB3uGXAj0BFME/ https://www.youtube.com/watch?v=L0XPSqYsv5U
Good concept but only managed to watch the first 10 minutes; the split screen thing is hard to watch and the sound quality is not very good. I think shorter, more to the point ones might be a better option with only the person being interviewed on screen. Just my opinion.
I'm still listening. I agree that for an audience of PWME, a shorter, more focused interview would be a good way to go but I appreciate both Ben and Ron doing this. I'd love to see the UK Biobank people interviewed, or Karl Morten (the Oxford guy that the MEA are supporting with last year's crowdfund) or the Simon Carding group at UEA.
Interesting right at the end at about 55:00 - Ben asks Ron what might be happening up until Xmas and Ron says they're considering doing very small clinical trials and have some candidate drugs in mind for trials of 5-10 patients (if I've understood that) - they'd be looking for a big effect that would show up in ten or so patients. He said that some of their big donors would be more interested in funding that than research that wouldn't pay off quickly, because they have a loved one with ME. (Again, if I understood correctly - the sound quality isn't brilliant.) Anyway, thanks to Ben and Ron!
Thanks for the notes. I understand it, but also it is a bit annoying as that mentality has not been great for us over the last few decades. Hopefully doing that sort of work will also mean that they will fund research that is more likely to pay of in the long-run.
It's very good, quite a casual chat. It's easy to poke holes and it's not easy to interview - every viewer probably wants something different so I think Ben did a great job of trying to talk about the main items. Personally I would have been interested in more specific details around the nanoneedle and if they have done further work on identifying molecular differences in the blood of patients. I would have thought that would be a precursor to clinical trials, it was interesting to hear they are speaking to pharma and startups but unless they have a target in mind I don't know what a drug company or clinical trial can offer, right now. (assuming they aren't randomly trying drugs on patients ) But it sounds like there is a lot of research going on, which is great.
i find it hard to take in information aurally. And I'm lucky if I can stick out a video for 5 minutes, let alone 10. A written transcript would be much more accessible to me.
I think it's an excellent idea on their part - if I were running a charity, I'd be doing this - and it's in patients' interests to be updated. I would like to see other charities doing this, though, or even us, if any of us are capable. Not all ME/CFS researchers would be willing to engage with patients in this way but a lot would, and the more we hear from, the better, I think. Such as James Baranuik! Perhaps OMF starting this series will encourage other groups to do similarly.
There's a transcript available here: https://docs.google.com/document/d/1QFtQsUo0mfg_xo-uNBhM2O7SYxXO90LB3uGXAj0BFME/
No worries - I got the transcript from someone else who had been passed it, so thanks to the transcriber too!
I doubt the female patient RD is referring to thinks it was an “accidental discovery”. But glad to hear RD is finally realizing there are several drugs that help PwME.
