Search results

I was meaning that would challenge the content of her letter but I would not want to criticise her personally. I used to think this but having studied PACE etc. I now conclude that GET is unlikely to be of any significant help to anyone diagnosed with ME/CFS.

I hope it goes without saying that I’m very pleased for Helen and anyone else whose health has improved, and I would not wish to criticise her. But I think her letter presents an opportunity to make the general point that anecdotal accounts of improvement following any type of treatment are not...

Two more letters on ME in Friday’s Times: https://www.thetimes.co.uk/edition/comment/times-letters-assisted-dying-and-the-call-for-a-public-debate-62qwqc2vv @Jonathan Edwards I wonder if I could persuade you to write to The Times in response to the first letter. It might be a good opportunity...

The Times has reported on Prof Garner’s BMJ blog in today’s paper: https://www.thetimes.co.uk/edition/news/infectious-diseases-expert-warns-of-spike-in-me-cases-307pfbjlg?utm_medium=Social&utm_source=Twitter#Echobox=1593067064

I tried to pre-empt this with my letter to The Times (see new thread). Unfortunately, the editing diluted the point I was trying to make but I hope it still came across to some extent. If anyone else is thinking of writing, my guess is that The Times may still be receptive to publishing letters...

Times Letters: Research into Chronic Fatigue Syndrome https://www.thetimes.co.uk/edition/comment/times-letters-research-into-chronic-fatigue-syndrome-w3scg6f9l

This seems to assume that funding a GWAS for ME is depriving other ME researchers from getting funding. But there is no fixed pot for ME research and no reason to think that this will reduce anyone else’s chances of getting funding for ME research. In the long run the results of the GWAS will...

This is a very valid point. I wonder if someone might like to make it in a letter to The Times. I would do it myself but I’ve just submitted a letter making a couple of different points. There’s probably never been a better opportunity to get a letter in The Times about ME...

Meanwhile, someone at the Guardian appears to have listened to the criticism and changed the photo at the top of its article:https://www.theguardian.com/society...ch-genetic-study-chronic-fatigue-syndrome-cfs The times they are a changin’. Before: Now:

Huge thanks to @Andy @Simon M Chris Ponting, Sonya, Luis and everyone else that’s helped to make this happen. I notice that there is nothing about this on the Science Media Centre website (yet). I don’t know if that it a good or bad thing but it probably explains why there isn’t anything on...

This is very good news. Huge thanks to @Michiel Tack and others who’ve helped the bring this about. (Not sure which other members of European ME Coalition are on here.)

Epidemiologist Ian Lipkin: Are we getting the pandemic response right? BBC HARDTALK Podcast: https://www.bbc.co.uk/programmes/w3cszc1x iplayer (TV): https://www.bbc.co.uk/iplayer/episode/m000k69l/hardtalk-dr-ian-lipkin-epidemiologist-columbia-university-new-york Blurb: “All of us fervently...

There was some discussion about the ethics of CBT/GET trials in another thread, where I wrote: “To me, the interesting ethical questions are: 1) Is it ethical to try to convince patients that their illness is reversible by their own efforts (SW’s CBT model) in the absence of any evidence which...

This is very much appreciated. I agree with @strategist that the CBT/GET model has been a much more significant factor in deterring people from ME/CFS research, but the demonisation has probably been a factor, and it has certainly appears to have deterred independent scientists from scrutinising...

One more question for @Hilda Bastian: Jonathan is one of the very few independent experts who has got involved with the issues under review. Out of interest, will the IAG be consulting any other truly independent scientists with relevant experience of designing and conducting clinical trials...

Thank you. That would be very helpful, and is what I was hoping for when I asked for clarification above. I agree, but God help us if that led anyone to conclude that we need more GET studies. I’m not even sure how an ME GET study could get ethical approval. I think the general issue of the...

I’ve only managed to a read a few posts in this thread, so apologies if I’m misunderstanding or repeating anything that has been said. First, thanks to @Hilda Bastian for taking on this task and engaging in this forum. I apologise if I have missed the explanation in this thread but please can...

This is what I was thinking of (the bit in bold in the second Tweet): https://www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html: “Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial...

There is this from Sharpe et al: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x To which you and Carolyn responded: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x However, I suspect that your correspondent may be thinking of something...