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What did I just read?! NLP

Discussion in 'General ME/CFS News' started by JaimeS, Aug 11, 2016.

  1. JaimeS

    JaimeS Senior Member

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    Voicing body and embodying voice - a performance
    Hilly Raphael, Jenni Mair, Sarah Frossel

    Building: Queen Anne
    Room: Duncan Classroom QA110
    Date: 08-07-2016 11:30 – 12:00
    Abstract
    Rebuilding your Life (RyL) is a recovery-focused programme developed by those recovered and recovering from Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and healthcare professionals(McDermott, 2015). Its ethos of co-enquiry enables all participants (recoverers and facilitators) to be equal collaborators (Raphael, 2015). The main facilitator, Sarah Frossell, uses Neuro-Linguistic Programming (NLP) and coaches each person within the group by truly attending to the voice of their body in terms of the illness and of their return to wellbeing.

    Jenni Mair (recovered after eighteen years of CFS/ME) and Hilly Raphael (a RyL cofacilitator) celebrate the restorying they experienced through RyL. They’ve identified concepts of each finding a voice, further enabled through their collaboration(Raphael, Mair and Frossell, 2015). They explore the voice that Jenni discovered which empowered her to acknowledge aspects of life previously un-voiced, and to create an image of a positive future which she’s already entering. They acknowledge the role of voice as a conduit of emotional and bodily stories, which transition from the internal to the external body, and from one to another; ultimately when attended to enabling healing and transformation.

    This reflection, acting as a meta-performance, explores the initiation of recovery through voice and body performing.

    Keywords: voice, body, healing, recovery

    References:

    McDermott, C. (2014) Patient and Public Involvement: Case studies in primary care research, National Institute for Health Research, p22-24. Available at http://www.spcr.nihr.ac.uk/PPI/rp/ case-studies-final-november-website.pdf (Accessed 05/06/16)

    Raphael, H. et al. (2015) Co-creating recovery in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) - Rebuilding your Life group programme Available at:http:// www.oxfordhealth.nhs.uk/resources/2014/01/RYL-poster-Feb-15.pdf (Accessed 05/06/16)

    Raphael, H; Mair, J; Frossell, S. (2015) ‘Finding new voices for recovery: A narrative from co-learners in an innovative group programme’, European Journal of Integrative Medicine, 7, supplement 1, 18-19, Available at: http://www.sciencedirect.com/ science/article/pii/S187638201500205X (Accessed 05/06/16)

    Link, but the above is all that's there: https://showtime.gre.ac.uk/index.php/hsc/bt/paper/viewPaper/937
     
  2. halcyon

    halcyon Senior Member

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    Looks like this is part of the NHS Oxfordshire CFS/ME service. Pretty interesting how much leeway the NHS gives these "specialist" service clinics. The description sounds a little more benign on their website:
    They fail to mention there that it's based on NLP quackery.
     
  3. Groggy Doggy

    Groggy Doggy Senior Member

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    NLP is helpful is you have a mild illness that was triggered by emotional trauma. When people say they have ME/CFS it can mean different things to different people. Cancer uses Stages while ME/CFS does have categoric markers assigned by an MD to distinguish severity. Cancer also uses the location of the damaged cells (lung, breast. lympth, etc), while ME does not. So its like ignorantly saying that stage 1 breast cancer treament is the same as stage 4 lung cancer treatment. Until this gets resolved, people will continue say just about anything they want (definition and treatment) because we can't prove otherwise they are incorrect.
     
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  4. Hutan

    Hutan Senior Member

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    @JaimeS, I've used my newly developed limerick skills (thanks, limerick thread) to interpret it for you:

    Recovery from ME is a choice,
    It's as simple as finding your voice,
    Just follow the hoster,
    and make a poster,
    And then feel free to rejoice.

    ETA: Hilly and Jenni and Sarah, feel free to use it at your next performance.
     
  5. JaimeS

    JaimeS Senior Member

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    OMG. Don't, don't, you'll summon all of the limerick-makers... noooo, it's too late! :D :D :D

    What's always struck me so much
    Is how incredibly 'touched'
    You would have to be
    To truly believe
    In such indefensible mush.

    (...now you've done it, Hutan. NOW YOU'VE DONE IT... MUAHAHA)
     
  6. Woolie

    Woolie Senior Member

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    calling @Graham, calling @Graham. Not like him to miss a limerick opportunity!
     
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  7. Woolie

    Woolie Senior Member

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    Wow,I had a look at the poster at your link, @JaimeS. It all seems so, well touchy-feely nice on the surface, but when you look deeper, it has a really ominous side.

    The poster includes quotes from MECFS participants, some of which are innocuous (along the lines of "I feel more hopeful about my future", "I feel more connected"), but others less so ("instead of just managing ME, recovery is possible". "We can use NLP tools to decrease or even stop symptoms").

    Imagine offering a programme like this to MS or cancer patients! Making them think they can actually recover from cancer by "modelling" their attitude on the lucky ones that did. Imagine the despair, and the self blame if those newfound hopes don't pan out. Imagine the way in which such messages could undermine the seriousness of the disease in the minds of the public ("recovery from cancer is all about having the right attitude").

    Its not ok for cancer or MS and its not okay for CFS/ME.

    I think it would be fine to have a purely psychological programme aimed at helping MECFS people feel connected, and help them to look for more positives about their situation (I wouldn't mind being part of one if I were able to travel a bit more, this illness challenges your morale to its limits). But the idea that this sort of stuff can lead to "recovery" is dangerous, and frankly, demeaning to those have not or will not achieve recovery, through no fault of their own.

    If you're reading this authors: keep to the psychological side of things. Don't try and fix the physical, its beyond your remit, you will not succeed. And on that note, instead of making the luck-endowed "recovered" people your role models, how about focusing on people that haven't been lucky enough to "recover" but have nonetheless managed to carve out a full life for themselves? Who manage despite their own suffering to be outward focussed and active members of society? Some patients work form their beds to help other sufferers. Think of their courage of spirit!

    There is where you'll find the truly inspirational role models, the real heroes.
     
  8. daisybell

    daisybell Senior Member

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    Co-creating re-co-veree
    Is all that you need for ME
    You know that your brain
    Just needs to re-train
    And hey presto, then brain-washed you'll be!

    And if you think that's not quite plain,
    Then let me just say it again,
    It's all in your head,
    Now get out of bed,
    And join me to sing the refrain!

    There's no need to lie in your bed,
    Unless you are practically dead,
    And really even then
    You should count to ten,
    And do some NLP/CBT instead.
     
  9. Hutan

    Hutan Senior Member

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  10. Hutan

    Hutan Senior Member

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    Last edited: Aug 12, 2016
    anniekim, L'engle, JaimeS and 3 others like this.
  11. sarah darwins

    sarah darwins I told you I was ill

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    anniekim, JaimeS, Hutan and 1 other person like this.
  12. Keela Too

    Keela Too Sally Burch

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    If recovered you want to be
    Please ask the recovered you see
    If they each stake their claim
    And shower you with blame
    Then for sure they hadn't M.E.
     
    JaimeS, mango, L'engle and 10 others like this.
  13. halcyon

    halcyon Senior Member

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    How fast would one of these NHS Foundation Trust CFS service sites get shut down if they decided to start offering antivirals or other real treatments to patients, yet they're allowed to offer crap like NLP, CBT, and worse with no repercussions.
     
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  14. TiredSam

    TiredSam The wise nematode hibernates

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    Well if it's really a programme developed by those recovering from healthcare professionals it could be useful.

    At first glance I thought how encouraging, a coach who attends to the voice of a patient, but then I read:
    So it looks like everyone has to explore Jenni's voice after all.

    Anyway if everyone's limericking then here's mine, about my latest bout of Tourette's (I'm a terrible sufferer), induced by the RyL programme:

    Whilst obediently being reflective
    In order to change my perspective
    I made the choice
    To use my voice
    To master the power of invective

    I had hoped that the medical humanities
    Could restory my health-based calamities
    But Jenni and Hilly
    Were just being silly
    So I externalised strings of profanities
     
  15. Hutan

    Hutan Senior Member

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    :rofl::rofl::rofl:

    Help! Limericks have spread like the plague.
    Calling Oxford, please launch a crusade!
    A poster against rhyme,
    or perhaps a short mime?
    Will soon see this evil well-slayed.
     
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  16. sarah darwins

    sarah darwins I told you I was ill

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    An Oxfordshire lad was in trouble
    With pains that were bending him double.
    He was told "We won't test
    For those pains in your chest.
    It's your narrative voice that's the trouble."
     
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  17. sarah darwins

    sarah darwins I told you I was ill

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    I realised I messed that up. His name was meant to be Hubble!
     
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  18. Solstice

    Solstice Senior Member

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    This seems like bullying and I will not have a part in it!





    ;)
     
  19. Wildcat

    Wildcat

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    Last edited: Aug 12, 2016
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  20. Wildcat

    Wildcat

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    .
    The 'Rebuilding your Life (RyL) NLP project that this thread is about, is a direct outcome of THIS:



    Claire McDermott and Dr Selwyn Richards:


    Dr Selwyn Richards (& Ms Clare McDermott)
    This feasibility study will pilot an innovative, multi-disciplinary approach which has been developed through 2 years of collaborative work in Dorset between specialist health professionals, patients with experience of recovery, researchers and patient support groups drawing on the concept of ‘Modelling Success’, taken from Neuro-Linguistic Programming (NLP). In this process, insights from individuals with experience of recovery have been combined with expertise from specialist health professionals to: • identify recovery skills. • develop innovative ways of communicating these skills with patients who may have cognitive difficulties making it difficult for them to read, use a computer or engage in conversation.

    http://public.ukcrn.org.uk/Search/StudyDetail.aspx?StudyID=14727
    .


    McDermott's research is funded by the NIHR - public funded.
     
    Last edited: Aug 12, 2016
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