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Paediatric patients with [ME/CFS] value understanding and help to move on with their lives, 2019, Katherine Rowe

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Dec 21, 2019.

  1. Andy

    Andy Committee Member

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    Open access, https://onlinelibrary.wiley.com/doi/full/10.1111/apa.15054
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    The TL;DR appears to be: supporting sick people with competent professional health services is beneficial to their outcomes. * If early. * If competent. * In children

    And you don't need to do a lot to make a difference. Just don't be a jerk for a start. And don't gaslight. Then pay attention and build from reality, not aspirations. Which says a lot about the BPS model, when literally any meaningful help would make a difference and it is still rejected as useless. The bar is as low as it gets and it still misses it. Like starving people rejecting your "food", because it isn't actual food.

    Which is as expected. If this experience were the norm outcomes would be massively improved, this is pretty self-evidence. Unfortunately this experience is the rare exception and there is immense resistance to changing that, the very idea is rejected as a pointless waste of time.

    Not sure what that tells us. Competent physician education based on the actual illness itself is what advocates have been begging for decades, along with research that will build a reliable knowledge base. So how do we get that to happen?
     
    Last edited: Dec 21, 2019
  3. Lidia

    Lidia Senior Member (Voting Rights)

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  4. Andy

    Andy Committee Member

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  5. Andy

    Andy Committee Member

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    Opinion piece based on the study that is the topic of this thread. Also mentions the editorial reference above.
    Paywall, https://adc.bmj.com/content/105/5/451.full
    Sci hub, https://sci-hub.tw/10.1136/archdischild-2020-319237
     
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  6. Lidia

    Lidia Senior Member (Voting Rights)

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    Who is the author @Andy ? I couldn’t tell from the piece.
     
  7. Andy

    Andy Committee Member

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    Someone who goes by the name "Archivist". I know no more than that.
     
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  8. Lidia

    Lidia Senior Member (Voting Rights)

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    Andy likes this.
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    edit: commenting on the 'Archivist' piece in what had been another thread.

    There was no control group, so how much evidence was there that these children were helped to get control back over their lives?

    Yuck.

    Wonder who this archivist is?

    Given the way this journal promoted the Lightning Process and downplayed the problems with SMILE it's interesting that they try to create the impression of being concerned by the way patients are treated. Sometimes those who like to talk about 'empathy' do so in a way that helps disempowers patients by assuming that they can so empathise with the way patients want to be manipulated and managed by authority figures to help deal with what is a very real illness.
     
    Last edited: Apr 19, 2020
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  10. mango

    mango Senior Member (Voting Rights)

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    (Not a recommendation.) Swedish BPS blogger Jörgen Malmquist recently blogged about the study, and added some extra comments yesterday:
    https://web.archive.org/web/2021042.../04/19/me-cfs-unga-personer-som-tillfrisknar/

    I think maybe someone has expressed doubts about his knowledge about ME, because he tweeted this the other day:
    Sten Helmfrid has commented on Twitter:
     
    Last edited: May 3, 2021
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  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Love Sten he’s dogged in his challenging of BS Tweets
     
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  12. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Let's check his whining more closely.

    When BPS believers talk about recovery there are a few things to consider. Recovery usually means back to health from before illness but that definition is unlikely to be the one meant. I'm sure there are others who can elaborate better than I can on that. So even if we presume full recovery is meant how can HE know it is so if there is no follow-up -- and there never is long-term. I think here statistically the term is regressing to the mean?

    How about people who dropped out? Are they followed up as to why they left? We've seen papers with small co-horts and rather relatively large drop out rates. No curiousity as to why because they don't want to know.

    And as we all know it's not just a matter of 'do some recover' but also were some harmed? And we know from endlessly checking and asking that the cabal do not believe in harms therefore they do not exist and do not need to be noted.

    But the cabal of believers like to keep it simple.

    So all of the negative commentary is bad, so bad and mean. Can't we understand --- SOME RECOVER!!!!.

    Well maybe, but we can't know for sure if you don't look too carefully (lax recovery definitions, drop outs, noting harm) or expect some kind of commitment to truly finding out (long-term follow-up [as in truly long term]).

    But at the end of the day I expect we are talking right past each other since we don't know that any particular BPS person is even referring to people with ME. All they ever see is fatigue.
     
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  13. Amw66

    Amw66 Senior Member (Voting Rights)

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    50 % recovered- is this a new estimate ?
    Not the rule of thirds
    Not the paediatric 80 %

    Goalposts moving again ?
     
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  14. Milo

    Milo Senior Member (Voting Rights)

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    Essentially this is a natural history experiment.
     
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