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UK - NHS England online tool and clinics for long Covid.

Discussion in 'Long Covid news' started by Kalliope, Jul 5, 2020.

  1. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I listened for a couple of minutes and decided I had other things to do. I did listen long enough to notice that her wording was remarkably similar to the wording Phil Hammond used in his video. At least as I recall it - so maybe my dodgy memory.

    You know the bit where they answer why some people don't recover quickly & they say some have a biological predisposition to fatigue and some are just more prone to distress & so more likely to suffer fatigue.

    Ut sounded familiar.
     
    ladycatlover and andypants like this.
  2. Cheshire

    Cheshire Moderator Staff Member

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  3. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Note that Jonas Kunst is a professor of psychology at Oslo uni.
     
    inox, Daisybell, rainy and 19 others like this.
  4. Midnattsol

    Midnattsol Moderator Staff Member

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    3,599
    He does seem to have some specific studies in mind with those examples, including one from UiO, that's good :)
     
    inox, Kalliope, mango and 10 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    There's some high degree of irony to liking PACE while not being aware that its model has been used in clinical practice for over a decade to such underwhelming benefits that he thinks it hasn't been tried yet.

    Maybe that will spur some bit of introspection. Then again, I'm pretty sure that PACE is a reliable test of someone's capacity for introspection in the first place so maybe not.
     
    inox, Mithriel, JemPD and 3 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Damn those anti-psychology professors of psychology! Dangerous vexatious activists against psychology. That's how deep the conspiracy goes!

    Could be an interested signatory to the open letters, @dave30th?
     
    inox, ukxmrv, rainy and 17 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  9. rvallee

    rvallee Senior Member (Voting Rights)

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    I stumbled upon this yesterday: https://www.hackneycitizen.co.uk/wp-content/uploads/Post-COVID-19-information-pack-5.pdf. It seems mostly tailored for pneumonia patients.

    Overall it's not bad even if missing quite a lot of details, it's really more of a generic post-ICU recovery from pneumonia. It's framed with a recovery period of 6-8 weeks in mind, but I'm not sure how much peace of mind it would bring to those experiencing the wild (not a typo) range of symptoms since it doesn't address them at all.

    I did have a bit of a laugh at the presence of spoon theory. I'm sorry I mean bean bag theory, because when medicine takes language from the patient community it must make slight alterations to it because reasons.

    I will credit that it gives strong advice to rest. I'm not quite sure this is accompanied with guidelines that actually give sick leave for it, though. That's usually the missing part of the equation, the advice to just rest as if this is something people could simply do on their own.

    There is however the advice on physical activity, which may be reasonable for patients with only pneumonia, but likely problematic for those for whom this isn't the main problem:
    The full section seems a bit muddled, but at least the last line should convey the proper caution:
    Methinks the prescribing therapist will be getting lots of calls.
     
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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  11. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    It may be confusing to suddenly have the support of understanding professionals, if that was never the case for many years.
     
    ladycatlover, ukxmrv, mango and 10 others like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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  13. rogerblack

    rogerblack Established Member (Voting Rights)

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    Merged thread

    Extremely dangerous NHS exercise guidelines post covid.

    https://www.yourcovidrecovery.nhs.uk/your-wellbeing/getting-moving-again/
    • By being active and starting some exercise you become stronger and fitter. You may notice your tiredness increase and some breathlessness at first but these should improve the stronger you get; this is a normal response to doing more exercise for all of us.
      • The more time spent being physically active, the greater the health benefits.
      • Regular physical activity along with eating well can help you recover, build your muscle strength and become independent again.
      • Try making a walk part of your daily routine to give your day structure.
      • Don’t worry if you need to stop and rest, that’s a normal part of recovering and getting strong agai

    I stopped skimming about there.
     
    Last edited by a moderator: Jul 29, 2020
    inox, ladycatlover, Michelle and 9 others like this.
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    Individualised guidelines I see.

    Doesn't matter what's wrong with you, we advise you do exactly what we recommend everyone do.

    Someone, well....lots of someone's, got paid actual money, and spent weeks, to come up with this.
     
  15. chrisb

    chrisb Senior Member (Voting Rights)

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    ...unless it isn't.
     
    Arnie Pye, inox, obeat and 12 others like this.
  16. Esther12

    Esther12 Senior Member (Voting Rights)

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    They do go on to say:

    So they advise people who are feeling unwell post covid-19 that 'the more time spent being physically active, the greater the health benefits' but also that 'if you feel unwell before, during or after, stop immediately and seek advice.'

    So someone who feels unwell and wants to get back to normal activity should actually immediately stop their activity and seek advice?
     
    Last edited: Jul 29, 2020
  17. Esther12

    Esther12 Senior Member (Voting Rights)

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    There was also this:

    The more of it I read, the more it seems to be sending vague and conflicting messages to patients, with a confidence that seem unjustified.
     
    Arnie Pye, inox, obeat and 19 others like this.
  18. rogerblack

    rogerblack Established Member (Voting Rights)

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    I should have perhaps elaborated on the original post.

    My worries are the entire tone of this piece is 'everyone will get better' - and is considering it entirely as normal exercise physiology, without raising one note of concern.
     
  19. Wonko

    Wonko Senior Member (Voting Rights)

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    What if you feel unwell while seeking advice?

    Immediate stop and then seek advice, then immediately stop because you feel unwell, so seek advice,......

    Someone hasn't given any thought to breaking out of this advice loop at all ;)
     
  20. NelliePledge

    NelliePledge Moderator Staff Member

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    UK West Midlands
    Sadly despite the NICE statement on GET I think this was to be expected from the people who were involved in putting this information together. They are the status quo and believe they are right.
     

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