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  1. Shadrach Loom

    Long Covid in the media and social media 2023

    Hubs for exchanging unlicensed media content, especially films and music. They represent a certain amount of legal risk and very little reward for the administrators, who are predominantly enthusiast/activist types. It’s therefore not unusual for torrent sites to disappear from time to time.
  2. Shadrach Loom

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    They contacted 162 orgs, of which 109 responded, so I agree it doesn’t look like a hideous job. Connect would likely have a database of foi emails for public bodies, though, which would save some of the admin work. If the analysis had been cleaner, the outsourcing would be justifiable.
  3. Shadrach Loom

    UK: All Party Parliamentary Group (APPG) on ME news, 2020 onward

    Connect Public Affairs, who attended, did that recent FOI research for AfME. It wasn’t greeted here with unqualified praise.
  4. Shadrach Loom

    Uplifts and hassles are related to worsening in chronic fatigue syndrome A prospective study, 2023, Friedberg et al

    Culling is a fairly standard aspect of wildlife management, though. I’ve eaten too many ducks to feel guilty if some of them make the ultimate sacrifice for the good of the park.
  5. Shadrach Loom

    UK: ME Association: Count ME In [survey]

    The location information requested is only regional, though, so wouldn’t have enough granularity to draw conclusions about NHS commissioning areas (which mostly seem to have retreated to the familiarity of PCT/county boundaries).
  6. Shadrach Loom

    Long Covid in the media and social media 2023

    Exactly the same here. The days are gone when doctors could get away with PFO*, TEETH** or NFN*** on their notes to each other, because patients are now routinely cc’d and can often access their summary records. * Pissed, fell over ** Tried everything else, try homeopathy *** Normal for Norfolk
  7. Shadrach Loom

    Long Covid in the media and social media 2023

    There is a recent NHS digital scheme for flagging reasonable adjustments on the summary care record, which is the one most people can access digitally via their GP, and which in theory acute trusts can also access, although in practice hospitals tend to have their own systems and only...
  8. Shadrach Loom

    Long Covid in the media and social media 2023

    When you say that patient’s medical records are flagged, what exactly do you mean? Is there a free text box where judgements such as “opiate seeker” or “potentially violent” are written plainly, or are they coded? And if the latter, is that code published, or a secret? Is its very existence...
  9. Shadrach Loom

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    Pretty sure that is Sun Tzu. Who, to be fair, was a general, writing on military strategy for a select audience of war geeks. “Old oriental saying” is an unfortunate term, suggesting that everyone east of India grows up with aphorisms about enemies tripping off the tongue. And idiots on Reddit...
  10. Shadrach Loom

    How long before the misery of ME is taken seriously? and Money’s the motive for calling ME a myth - Sophie Palmer

    Those points, while true, are insufficient justification for the claim made in the article’s first sentence. There can be doubt that ME is a neurological illness, and there can be doubt that it is of viral origin.
  11. Shadrach Loom

    A new consensus? - ME/CFS skeptic blog

    Very solid piece. Good to see cakeism exposed.
  12. Shadrach Loom

    Unrest on YouTube

    This looks official, and can be navigated to from unrest.film. Apologies if Jen’s “it’s never official” from five years ago still applies, of course.
  13. Shadrach Loom

    Times (Peta Bee) Exhausted? You may have hyper-fatigue

    https://www.thetimes.co.uk/article/exhausted-you-may-have-hyper-fatigue-jc9dmvmbg https://archive.ph/jhAOF (unpaywalled) There’s a Dec 22 podcast from Mintel on how to engage hyper fatigued consumers here. It’s unhelpful enough for ditzy health journalists to spend so much time on TATT and...
  14. Shadrach Loom

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    Joyful positive wellness, yes, but also inspirational #wellbeing and empathy-signalling #worklifebalance, both of which are rife in fluffy media and on social platforms, and provide hooks on which to hang “fatigue”. I agree with you massively.
  15. Shadrach Loom

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    All this, except that my guess would be legal is invoked only when there’s editorial concern, rather than being an integral part of workflow.
  16. Shadrach Loom

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    Those are fair questions, although the point about existing articles on file relies on assumptions about workflow and content management that may simply not reflect PA’s operational capabilities: their job is to churn topical pieces out at speed and scale. But the others are worth asking. Some...
  17. Shadrach Loom

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    That conspiracy theory would need far more than a nonsensical article to support it. As a bare minimum, you’d need to prove that there are strong links between the commissioning editor and the various bogeymen you suspect of being involved. There isn’t even much psychologising in the piece...
  18. Shadrach Loom

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    Apropos, I was surprised by the lack of general news coverage of ME awareness day, at least in the UK. It’s an enormous shame that the press packages prepared by advocates failed to land, and that PA chose to pass this one to a teenage scribbler who spoke to a random doctor rather than doing the...
  19. Shadrach Loom

    "Am I just tired or is it ME?" Press Association article that has been picked up by some UK & Irish media outlets

    That is spectacularly bad. Fortunately, the Independent’s readers can be counted on one’s fingers.
  20. Shadrach Loom

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    I don’t know if there is an r/vicars subreddit, but if there is, it would be full of spite and rage at thick parishioners and inept churchwardens and bastard bishops. Reddit is spectacularly unrepresentative, because it skews male, millennial and malevolent.
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