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Thanks. Email received, but it says it’s from The ME/CFS Biomedical Partnership. Might be a good idea to change the name on the account that’s sending the emails to DecodeME.

The Unherd article by Stuart Ritchie that Hilda links to (“There should never be heroes in science”) is very interesting. Here are some quotes (my bold): “Stuart Ritchie is a Lecturer in the Social, Genetic and Developmental Psychiatry Centre at King’s College London. His new book, Science...

My evidence-based medicine heroes are the ME patients like Alem, Tom and Bob who have challenged the medical establishment with scientific and legal arguments, and the few disinterested academics and scientists like David and Jonathan who have chosen to stand up for people with ME, truth and the...

I see that Paul Garner’s blog is the most read article on the BMJ Opion website. It has over 8,840 shares on Facebook. The second most read article has 1,350 share and the third has 120. I hope this may alert the BMJ to the importance of these issues he raises. Please keep sharing. And please...

My comment has now been published: https://blogs.bmj.com/bmj/2020/06/23/paul-garner-covid-19-at-14-weeks-phantom-speed-cameras-unknown-limits-and-harsh-penalties/

I take it as a compliment to be mistaken for @Simon M!

I've added the following comment (pending approval) below Paul Garner's BMJ blog: 'Professor Garner writes: "Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19". In an...

Yes, Prof Garner seems to have been on a journey of understanding in the last few weeks. It’s a shame the NS didn’t quote his latest BMJ in which he said, “Health services are largely institutionally prejudiced against people with chronic fatigue and ME and in some cases these attitudes are...

Like others, I didn’t get a confirmatory email after registering. I also didn’t get an email from the previous site telling me about DecodeME. Can I suggest that 1) It would be a good idea for everyone who has already registered to now be sent an email thanking them for registering their...

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...