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  1. R

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Yes, that was a great spot. Thank you. It also makes me wonder what other talks by BPS enthusiasts there might be out there that we’ve missed. The great thing about all these talks being online at the moment is that they can be easily accessed, recorded and shared. If only we had recordings of...
  2. R

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Standing on the shoulders of giants like @dave30th!
  3. R

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    I’ve just sent a letter to the Guardian making this point:
  4. R

    George Monbiot on ME/CFS, PACE, BPS and Long Covid

    Yes, I included this clip in the original thread that George retweeted. That was from the Westminster Hall debate rather than the HoC debate, but I know George has been sent a huge amount of links by email and Twitter and his 2 article suggest that he has read a great deal, so I would be...
  5. R

    Blog: M.E. myself and I, "How baffling that I’m happy with my lot"

    I was pleased that Anna ended the blog by saying: “Please know that this is my take on my own life with my own set of circumstances and symptoms. It will vary dramatically from others. None is right or wrong. No person can ever really comment on whether or not another person should be happy or...
  6. R

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

    My complaint about the BBC Breakfast interview is ongoing. They are dragging it out far beyond the usual timeframe for responding (as predicted) but I shall persevere. There is a long way to go yet, even if my appeal against their original decision is rejected.
  7. R

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

    I was thinking about that book this afternoon, trying to remember when you were giving that immunology talk that you wanted to get out of the way first, wondering when I was due to start cajoling you again. I’ll put it in my diary for May 1, if I don’t hear from you before then.
  8. R

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

    I've never been shy of criticising AfME in the past but they have really raised their game recently. What really upsets me about news stories like the one on Newsnight is how it affects the way I am treated by people who know me. It pains me to think of friends and family saying "Did you see...
  9. R

    2021 John Maddox Prize, nominations are open until 14th June 2021

    I sent the following letter to Nature last year but it wasn’t published and they stuck to their policy of not entering into discussion about letters submitted for publication, despite my best efforts.
  10. R

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

    “At the appropriate juncture, in due course, in the fullness of time” as Sir Humphrey might say. As far as I’m aware we’ve not had any news of progress since Hilda was appointed IAG lead over a year ago. Last April we were told there would be a progress report “soon”. In February we were told...
  11. R

    News from Aotearoa/New Zealand and the Pacific Islands

    Great. Will look forward to watching it. Can I suggest you set it up as a new thread and post a link to the thread from here so that more people see it? Thanks for all your work on this, Carolyn.
  12. R

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

    As far as I understand from Hilda’s tweets all we’re getting is a progress report. (On 16/01/21 she tweeted “Very belated progress report will be ready soon.”) I hope that will include an explanation of why we haven’t had any news on progress for over a year. As far as I’m aware we still don’t...
  13. R

    BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

    There's also this really important point that @Mithriel has just made on the general PACE thread (https://www.s4me.info/threads/a-general-thread-on-the-pace-trial.807/page-48#):
  14. R

    A general thread on the PACE trial!

    This is a really important point that I'm not sure I had considered before. I wish I'd added it to my BMJ response to Miller and White. There is also the fact, which I did raise, that Miller, who was on the PACE trial group as an "independent" assessor of trial safety data, had been prescribing...
  15. R

    Article in Vice: The Medical System Should Have Been Prepared for Long COVID

    Thread in response to feedback: The whole thread can be read here: https://threadreaderapp.com/thread/1372920465010876416.html Separate thread: Whole thread can be read here: https://threadreaderapp.com/thread/1373009236029009928.html
  16. R

    Suggestion for S4ME thread of ME testimonies

    Has anyone had any more thoughts on this? Has it been discussed by the committee? Yes, I like this idea. A core, moderate thread with just brief testimonies in a standard format with a word limit, and no replies, with the option to link to a separate thread for each testimony for anyone who...
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