Ok, it's just a tweet, but seeing as we are getting started here.... https://twitter.com/user/status/920345443455905792 ETA. Anyone know why that doesn't appear as a tweet but only as a link ?
I will have a look for different addins over the weekend. I'm off work next week so can spend some time on set up things
This is what I get at that first link. Bit cryptic! https://twitter.com/user/status/920345443455905792
I've been looking over the past few days (at Jane Colby's and the MEA's Twitter feed) and haven't seen anything.
I think that Charles Shepherd may have given us a little snippet of a sneak preview during the Q&A after the screening of Unrest by the UK ME/CFS Biobank. He was responding to questions about using the film to persuade the medical establishment that this is a real disease and to improve the lives of people with ME. He broke his response down to three veins: media, politicians and the medical establishment. The transcript of the relevant part is below. I'm sure I've also read or heard something in the last couple of days about changing the composition of the NICE review guideline panel (edited) but the source is eluding me.
I wondered about that but wasn't sure. If anyone can find that point in the video, I'd be happy to transcribe.
My issue is that this gives the BPS crowd three more years to pump out more shit just as Crawley has been doing and change the current NICE guidelines back to the same ones in three years or something even worse. If something is not fit for purpose why the F**k would you just carry on using it for three years? Doctor..."you have cancer, the current treatments are not fit for purpose but I am going to prescribe them for you for three years anyway" Bollocks!!!!
@large donner , it's Charles Shepherd's stated view that they are not fit for purpose. No doubt NICE's official stance would be that they were acting on the best evidence available at the time, blah, blah, blah. As far as I'm concerned, the BPS crowd can churn out all the crap papers they can manage and hopefully the SMC will continue to support them, although the recent reception of the SMILE trial might give them pause for thought. Meanwhile, the biological evidence mounts.
I reckon by 2020 we're gonna have 3 effective drug trials. Rituximab, cyclophosphamide, filgotinib. That would be absolute gamechangers.
I thought you'd made that one up, just to catch us out! But it's real: https://en.wikipedia.org/wiki/Filgotinib I've never heard of an ME trial on it, though - have I missed something?
By my knowledge it's being trialled for a number of diseases like ulcerative colitis, crohn's disease, RA but M.E. aswell. Can't however find the stuff about M.E. again. It's a Jak-1 inhibitor whatever that means.
After a bit of googling, I see that it was mentioned on another forum as something that Kenny de Meirleir was rumoured to be considering trying for ME/CFS but there's no information about a trial, AFAIK.
I found the other reference to NICE at the UK ME/CFS Biobank / Unrest Q&A. It was by @Jonathan Edwards , not Charles. Thanks @Skycloud . I wouldn't have bothered searching if not for your memory.
There won't be an official trial by Galapagos / Gilead, these are the official indications: http://www.glpg.com/clinical-pipelines The idea is that it might be prescribed for de Meirleir's patients if (unofficial) tests are successful. Best case scenario for market launch is end of 2019.