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  1. R

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    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/
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I take it as a compliment to be mistaken for @Simon M!
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    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...
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    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...
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    DecodeME - UK ME/CFS DNA study underway

    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...
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    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    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.
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    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    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...
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    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    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...
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    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
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    The Times view on taking myalgic encephalomyelitis seriously: Chronic Condition

    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...
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    United Kingdom: ME/CFS in The Times (including Sean O'Neill)

    Times Letters: Research into Chronic Fatigue Syndrome https://www.thetimes.co.uk/edition/comment/times-letters-research-into-chronic-fatigue-syndrome-w3scg6f9l
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    DecodeME - UK ME/CFS DNA study underway

    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...
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    The Times view on taking myalgic encephalomyelitis seriously: Chronic Condition

    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...
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    DecodeME - UK ME/CFS DNA study underway

    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:
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    DecodeME - UK ME/CFS DNA study underway

    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...
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    Members of the European Parliament call for more funds for research into ME/CFS

    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.)
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    Coronavirus - worldwide spread and control

    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...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    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...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    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...
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