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Home-based family focused rehabilitation for adolescents with severe Chronic Fatigue Syndrome, 2018, Burgess et al (inc Chalder)

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Aug 18, 2018.

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  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    This would be consistently bad advice in my view. It's a nightmare in my view that all these professionals would be given bad information.

    One could easily see that this would increase the pressure on the patient to comply. It could also increase the risk of child protection procedures if the child wasn't complying in some way or even was complying but was deteriorating, or not improving.
     
    Dolphin, Aug 31, 2018
    #41
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  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I have never heard of a six-item version. Anyway, it means that it is hard to compare the results with other studies or indeed population norms.
     
    Dolphin, Aug 31, 2018
    #42
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  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    That's a huge number of sessions. The sessions were 1-2 hours long. And they were done in people's homes. This would add up to quite an expensive therapy.

    Also there was the contact with the other professionals in the lives of these young people, which adds to the costs.

    Over a mean of 24 months, some of the patients could have improved anyway.

    There could also be regression to the mean, where if you pick people at their worst, they will often tend to go towards the mean over time, i.e. they could improve (while the distribution might not change overall with other people who were not followed deteriorating)
     
    Dolphin, Aug 31, 2018
    #43
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  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    A young person once told me they lied that they were better to get away from a therapist. Jane Colby said she had heard of similar things in the UK. Given all the sessions these people were having in their homes, it is conceivable that people might lie or exaggerate how well they were doing so that they could stop the sessions.
     
    Dolphin, Aug 31, 2018
    #44
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  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The individual scores. Note these are for questionnaires rather than objective measures. The fatigue scale is 0-33. The two scores of 29 that were reported at one year follow up are not very good.
    Burgess 2018 Table 2.png
     
    Last edited: Aug 31, 2018
    Dolphin, Aug 31, 2018
    #45
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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    For what it is worth.

    It would have been interesting to have such information for all six individuals.

    It would have been interesting for the second individual to know whether they are actually working full-time or what is their situation.
     
    Dolphin, Aug 31, 2018
    #46
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  7. Sean

    Sean Moderator Staff Member

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    At 1-2 hours long, 33 sessions is a hell of a burden all on its own, before we look at anything else.
     
    Sean, Aug 31, 2018
    #47
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    So any credit for improvements goes to the therapy but any increase in fatigue is due to something else.
     
    Dolphin, Aug 31, 2018
    #48
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  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Anything is possible. I think it's much more likely the patients were not fully recovered and that this is unfounded speculation.

    Here's a long-term study of people who became ill when they were young people.
     
    Dolphin, Aug 31, 2018
    #49
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  10. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Aug 31, 2018
    #50
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  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    Teenagers in particular are very adept at this. Tell a person what they want to hear to make them go away.
     
    Amw66, Aug 31, 2018
    #51
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  12. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Isn't this a quite normal response to people causing you psychological/physical harm? It's the basis for false confessions for instance, where people admit to crimes even when it is later proved by irrefutable evidence they didn't commit them.
     
    Luther Blissett, Sep 1, 2018
    #52
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  13. Hutan

    Hutan Moderator Staff Member

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    There's this. And there's also the fact that if people are making clear it that you are sick because of some flaw in your personality, some weakness, and that if you tried harder you could be well, well, it's very easy to fool even yourself into thinking that you are much less sick than you actually are. I suspect many young men, who want to believe that they are bullet-proof, may be particularly susceptible to that.

    For example, my son was being seen by a circulatory systems specialist for orthostatic intolerance. The specialist asked my son if he had any trouble when showering. He said 'no'. I had to say 'but you don't shower, you always take a bath now'. So the specialist asked about after a bath. And my son said it was fine. And so I had to say 'well, you lie down on the bathroom floor for about ten minutes afterwards'. We realised he was doing that when he wasn't emerging from the bathroom until ages after the bath water was emptied; he would just wrap himself in a towel and lie down. When the specialist asked why he did that, he said 'it's an easy way to get dry'. So frustrating! I'm coming across as the mother who wants to be special by having a sick son, when actually the son just likes lying down a lot. And we'd waited 6 months to see this guy and it was costing $600. And my son did actually know that there was a problem with orthostatic intolerance; he hadn't been dragged to see the specialist.

    Fortunately, the specialist had heard things like that before and the holter monitor established that there was a real problem. But, the stigma around ME makes it quite possible that people, and particularly children, will under-report symptoms when asked.
     
    Last edited: Sep 1, 2018
    Hutan, Sep 1, 2018
    #53
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  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Note that I don't recall anything in the current study about the participants saying they were recovered. Improved is not recovered. This makes it extra dubious that they would believe the patients truly had normal levels of fatigue.
     
    Dolphin, Sep 1, 2018
    #54
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