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Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

Discussion in 'PsychoSocial ME/CFS Research' started by Esther12, Nov 5, 2017.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    @Sbag posted this in another thread, but I thought it was worth it's own.

    "Co-creating recovery in CFS/ME:
    A reflexive exploration of a Rebuilding your Life
    programme
    Hilly Raphael (Quigley)
    October 2015
    (final version with Addendum -
    participants’ responses Nov 2015)"

    It say things like:

    I probably don't need to point out that some people are lucky. They recover from cancer when others die. That doesn't necessarily mean that we should try to learn from their 'accomplishments' and 'practical knowledge'. If you want to get rich, studying the mindsets of lottery winners may not be a good use of your time.

    I have to warn you that there are poems included too. I'm not posting them here. I'm actually not posting the most annoying bits, as they go too far.

    There's things like this LP-style stuff:

    So people are encouraged to believe that saying positive things about their health is good for their health, then this is seen as being good for their health because they say positive things about their health?

    "I've got lots of money, I've got lots of money..."

    Has your mantra really helped improve your financial situation?

    "I've got lots of money, I've got lots of money..."

    We're all going to be rich!

    They were so loving being recovered, that they just felt they needed to be a bit more recovered.

    They did a poster for BACME:

    Although it now seems to be unavailable.

    A good thing: In the appendix there are responses from participants to the report, and I think this is a good thing to do. I'd like it if the participants of all qualitative research had an opportunity to put their un-edited comments on the researcher's paper in an appendix.

    There was also this from a professional, which could be seen as indicating a hunger for a new fad as awareness of the problems with CBT/GET spread:

     

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    Last edited: Dec 15, 2017 at 3:36 AM
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Looks like they also did a performance:

    https://showtime.gre.ac.uk/index.php/feh/bt/paper/viewPaper/937
     
  3. Effi

    Effi Established Member (Voting Rights)

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    I think it would be interesting if someone conducted a study on these LP type approaches in terms of what the mechanisms are behind people completing all the steps of the programme resulting in a completely warped sense of reality. Or is it just plain and simple brainwashing wrapped in a shiny new wrapper?

    ETA: I always laugh when I see phrases like: "your body hears every word you say". My body must be deaf then.
     
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  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    A 2015 poster:

    2017 poster:

    http://insight.cumbria.ac.uk/id/eprint/3074/1/Cox_FeasibilityStudy.pdf
     
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  5. Inara

    Inara Senior Member (Voting Rights)

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    @Esther, THANK YOU very much for opening an extra thread, looking deeper in this document and commenting it.

    For me personally, British Association for CFS/ME is absolutely lost; I'm so glad I was wised up here.

    Sometimes, after reading things like that, I feel very sad and wonder "do we have a chance?" But I won't give up.
     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    What can one say?

    How is it that official educational establishments are encouraging drivel of this order of vacuousness?

    Presumably if White and friends get their way with ten thousand more talking therapists we ill have double the amount of drivel.

    Perhaps the one hope is that someone in the present government will identify this as a waste of money worth leaping on.
     
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  7. Esther12

    Esther12 Senior Member (Voting Rights)

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    Promotion of 'RyL' (rebuilding your life) here: http://theedge.nhsiq.nhs.uk/wp-content/uploads/2016/10/RyL-information.pdf

    I've also attached a copy.

    It promotes the relentless 'process' of recovery.

    It also includes this:

    I think that the King's fund is quite influential, but they seem to be shit, heavily promoting Michael Sharpe's agenda. Pretty annoying that they have this sort of thing as their vision of 'collaboration' with ME/CFS patients.

    It looks like Action for ME were promoting Clare McDermot's work at their 2014 Severe ME event:

    "Recovery strategies based on the Neuro-Linguistic Programming concept of 'modelling success', adapted for use in severe CFS/ME through in-depth Patient and Public Involvement development work conducted over two years. The intervention includes a range of NLP techniques, delivered through audio recordings, direct therapist contact and social contact via peer recovery support group. One year active intervention + one year support and follow-up." [now off-line but was reported to have formerly been at: http://www.actionforme.org.uk/get-informed/news/our-news/our-severe-me-event-get-involved]
     

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  8. Wonko

    Wonko Senior Member (Voting Rights)

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    It's not doing my hypertension any good.
     
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  9. large donner

    large donner Established Member (Voting Rights)

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    The problem is that they are already claiming CBT etc can be done by dvds and by following online programs. At the same time Theresa May has appointed Wessely in charge of the socialized medicine side of hunting down and labeling more and more people mentally ill using top athletes and royalty to "come out and discuss their mental health problems".

    But that's ok isn't it cos your government cares for you and wants to know exactly what you think and correct it with NLP at a time where we have probably the largest income gap between the rich and the poor and the BBC is doing features claiming more and more people are off work with "stress related disorders, anxiety and depression" which they claim is them being mentally ill, instead of them perhaps looking at the reality of the workplace, low wages double work load and rising prices.

    Isn't it the case that its logical to be disillusioned about such workplace conditions and normal or are we all falling for the establishment attempt to declare dissent and dissatisfaction as mental illness?
     
    Last edited: Nov 5, 2017
  10. strategist

    strategist Established Member (Voting Rights)

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    Does anyone understand what is meant? Evidently the author wants to impress with superior intellect, but it's just gibberish.
     
  11. Sbag

    Sbag Established Member (Voting Rights)

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    I think it is related to this group which is part of the Oxfordshire NHS ME service - https://www.oxfordhealth.nhs.uk/service_description/oxfordshire-chronic-fatigue-syndrome-me-service/
    I think I came across the paper when I was looking up the name of the author in relation to something else and she came up in relation to this "service". There is a poster on that site (https://www.oxfordhealth.nhs.uk/wp-content/uploads/2014/01/RYL-poster-Feb-15.pdf) so not sure if that is the same one that was used for CMRC
     
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  12. Sbag

    Sbag Established Member (Voting Rights)

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    Seems very cultish.

    Maybe it's the next reincarnation of the Lightning Process in that you don't need the paper circles on the floor - you just chant the mantra without the need for props
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, I understand entirely what is meant. The author does not want to impress with superior intellect but rather with togetherness with the girlie spirit. It is all about running across the lawn in your nightie rather than using controlled methodology to reduce risk of bias. As all girlies know, running about in your nightie is much more REAL than any silly sums. It feels really 'heuristic' - such a lovely word like the wind between your legs. And intertwining - such fun. Oh how lovely. And deeply satisfying. A few ponies would help.
     
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    I have to ask, are ponies sufficient, or would, for the best results, unicorns be required?
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Oh, they would be really really lovely!
     
  16. chrisb

    chrisb Senior Member (Voting Rights)

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    Is that because of the trap?
     
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  17. Inara

    Inara Senior Member (Voting Rights)

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    I'm always astonished how easy it sometimes is to get a PhD.
     
  18. Inara

    Inara Senior Member (Voting Rights)

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    I like your post very much.
     
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  19. Inara

    Inara Senior Member (Voting Rights)

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    I remember "heuristic" from religion classes in school.

    For me it sounds like "we collected data intuitively."
     
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  20. Jan

    Jan Senior Member (Voting Rights)

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    Can we have a 'BULLSHIT' button installed somewhere please? It is very satisfying when they use it on The Last Leg (tv prog).
     
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