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  1. Esther12

    United Kingdom: Science Media Centre (including Fiona Fox)

    Building Trust in Science Communication: The Role of Journals & Journalists, Pre-& Post-Publication Panelists: Ivan Oransky, Retraction Watch Fiona Fox, Science Media Center, UK Renee Hoch, PLOS Publication Ethics Team I've only watched bits of this, and it was only of interest because so...
  2. Esther12

    COMET initiative: Core Outcome Set for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    https://www.comet-initiative.org/Studies/Details/2103 It would be nice to know more details about all this.
  3. Esther12

    Patient perspectives of recovery from [ME/CFS]: An interpretive description study, 2023, Hasan, Busse et al

    Doesn't sound good. Sad if a well meaning relative was persuaded to put money into something likely to make things worse. FB group linking to it:
  4. Esther12

    News from Scandinavia

    Interesting stuff, thanks for posting. I had some trouble with google translate but got through in the end.
  5. Esther12

    Nature - Online harassment: a toolkit for protecting yourself from abuse

    Yes. My guess would be that they read the SMC document and then just looked for a supporting article. I thought that, especially the first piece, was an interesting insight into how some people within science view these matters. To me, there were people viewing some legitimate aims and...
  6. Esther12

    Empathetic verification: covering ‘Long COVID’ in Norwegian newsrooms By Hanne Østli Jakobsen. 2022. Reuters Institute Oxford

    Thanks. A bit annoying - I'd like to read those original documents. There was already some interesting stuff in there for helping understand the perspectives and assumptions of these people.
  7. Esther12

    Nature - Online harassment: a toolkit for protecting yourself from abuse

    I think this is worth reading all of: https://www.nature.com/articles/d41586-022-02766-w Posting because it includes a link to the Andrew Anthony Guardian piece on Sharpe: There's also this Nature editorial introducing it: https://www.nature.com/articles/d41586-022-02818-1 These pieces...
  8. Esther12

    Empathetic verification: covering ‘Long COVID’ in Norwegian newsrooms By Hanne Østli Jakobsen. 2022. Reuters Institute Oxford

    https://reutersinstitute.politics.ox.ac.uk/sites/default/files/2022-07/RISJ%20Paper_HanneO_Final.pdf?utm_campaign=Future%20of%20Journalism&utm_medium=email&utm_source=Revue%20newsletter This is listed as a 'Journalist Fellowship Paper', and I don't know if it's something likely to be read by...
  9. Esther12

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

    The George Davey Smith jovial bit from 14:20 about a 'threatening phone call' from Oxford reminded me of the way actions from powerful institutions can be viewed.
  10. Esther12

    The Effects of Messaging on Long COVID Expectations: An Online Experiment, 2022, Mills et al

    The participants were chosen to not have any personal experience that might influence their managed imaginings ("We excluded those that had a positive COVID-19 test result to avoid results being influenced by participants’ prior personal experiences of COVID-19 or long COVID") When these...
  11. Esther12

    The Effects of Messaging on Long COVID Expectations: An Online Experiment, 2022, Mills et al

    I wondered who would think that this was a piece of research that could support the claims made, and then saw that most of the authors were from the Behavioural Science and Insights Unit. A decade ago I'd have thought that this would be a valuable example of how bad things can be. I've since...
  12. Esther12

    Suzy Weiss Manifesto on “Spoonie” Culture

    On-line culture and social media can draw attention to the people who most want attention, and that means that often a lot of attention can go to the more ridiculous people in any community that doesn't have systems for self-policing. That's not a great thing, and I can see problems with that...
  13. Esther12

    Need an answerphone!

    Sometimes it works out best to just go with what's currently the most mass market product, even if it's not really what you want. I'd expect that a answering machine/phone would be cheaper than a rare solo answerphone. I might have misunderstood you, but you could have a cordless phone in one...
  14. Esther12

    JK Rowling new book — chronic illness references

    I've noticed that a number of the people who were early supporters of Rowling's views on trans issues had come from that culture of lazy skepticism that had been condemning of those criticising PACE, etc.
  15. Esther12

    Long Covid in the media and social media 2022

    Just saw that the CLOCK long covid researcher tweeted about that article.
  16. Esther12

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    Thanks Robert - that was almost certainly it. Shows I'm at least a year behind with this stuff!
  17. Esther12

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    I had a tab opened with a file 'Response to Sir Jonathan Montgomery.pdf', but by the time I went to read it it had been purged from my temporary files, and now I can't find it online. Anyone know what this may have been? I've got no info on it other than the file name.
  18. Esther12

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

    Isn't Garner around retirement age anyway?
  19. Esther12

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    I was thinking that I've not got a good understanding of all the details of what happened here and that I'd like to look into it more - good bump!
  20. Esther12

    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    I've not read the transcript of his talk that was posted, but the slides have a troubling tone. Maybe I shouldn't comment without reading the transcript but I just wrote this out for myself. "SUCCESSFUL MANAGEMENT IS ACTUALLY VERY REWARDING FOR THE CLINICIAN" "Basic Tenents of Management •...
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