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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. Sbag

    Sbag Senior Member (Voting Rights)

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    bit too cold for that at the mo - so maybe it only works in the summer. Or maybe being chased by the pony helps keep you warm
     
  2. large donner

    large donner Senior Member (Voting Rights)

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    Ah gee thanks! Usually people don't like my "fart conspiracy theories" as they think ME is the only conspiracy (except even that is just one big diarrhoea accident) and only in Russia, China and North Korea does propaganda exist in the news and news events.
     
    Last edited: Feb 10, 2019
  3. Wonko

    Wonko Senior Member (Voting Rights)

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    Is it still a conspiracy theory if it's true?
     
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  4. Barry

    Barry Senior Member (Voting Rights)

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    As data analysis goes, that's about as psycho-anal as it gets.
    Objectively speaking of course :p:sick:.
     
    Last edited: Nov 5, 2017
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  5. Barry

    Barry Senior Member (Voting Rights)

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    OK in the dramatic arts maybe, in the farce genre.
     
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  6. Barry

    Barry Senior Member (Voting Rights)

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    Also known as smorgasbord, or word salad.

    https://en.wikipedia.org/wiki/Word_salad
     
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  7. Wonko

    Wonko Senior Member (Voting Rights)

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    Gibberish is a much undervalued art form :p
     
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  8. Barry

    Barry Senior Member (Voting Rights)

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    Everything in its proper place :p.
     
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  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    You couldn’t make it up

    Oh okay you can just call it heuristic
     
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  10. large donner

    large donner Senior Member (Voting Rights)

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    That's the kind of question one needs to ask the FBI the CIA, Fox news and the BBC etc.
     
  11. Esther12

    Esther12 Senior Member (Voting Rights)

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    One of the reported 'achievements' from this project was the creation of this blog: https://inturnship.wordpress.com/about/

    Nothing posted on it yet.

    It looks like this NLP thing is being assessed in a feasibility trial paid for by NIHR.

    It looks like there may be no control group, but they do say that for a secondary outcome they have "electronic activity and sleep measurement"

    They say results will be available in 2016, but I could not find anything.

    From an abstract Dolphin found at an NLP conference:

    https://anlp.org/files/2014-abstract-summary_11_378.pdf
     
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  12. Alvin

    Alvin Senior Member (Voting Rights)

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    Have not read the reference or the rest of this thread but this is the quote of the day (if not month or year)! :grinning:
     
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  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    When it comes to drippy 'compassionate' nonsense dressed up in pseudo-intellectual prose, not many girls are going to be able to beat Vincent Deary!

    Thanks for that. I've uploaded the poster here, as things like this can go missing right when you want them!

    I've heard bad things from others about the Oxfordshire NHS ME service.
     

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  14. Woolie

    Woolie Committee member

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    Yea, thank you for not genderising this. There is no need. Plenty of examples on both sides of the gender divide.
     
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  15. Sbag

    Sbag Senior Member (Voting Rights)

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    I've heard bad things from others about the Oxfordshire NHS ME service.[/QUOTE]

    I wanted to find out who the GP is that runs the clinic, if you know anyone that went there could you ask?
     
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  16. Valentijn

    Valentijn Not a moderator

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    I don't think it's about the gender of the author, so much as the exploitation of gender to sell something to a specific audience. E.g., the "gift-giving" pyramid scheme that's been popular on Facebook around Christmas time, dressed up as woman-power sisterhood to conceal the greed, inequity, and hierarchy (and fraud) inherent in such schemes.
     
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  17. Trish

    Trish Moderator Staff Member

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    This 'treatment' is run by my local ME service (Dorset) which, when I had contact with it up to 6 years ago was uncontroversial, run by an OT and based on pacing using activity diaries and relaxation. I even had a good conversation with her in 2011 when the first PACE paper came out where we discussed its obvious flaws - (I was completely unaware then of just how bad PACE was).

    Then that same OT in charge started telling me about her contact with the local Lightening Process practitioner and enthusing about LP. I did a bit of on-line digging and decided I didn't want anything to do with this, so discontinued contact with the ME service.

    When I found out a few months ago about how this initial contact with LP seemed to have evolved into this weird NLP based 'treatment' being inflicted on local severe patients, I looked it up and found this publication, one of whose listed authors is that same local OT:

    BMC Complementary and Alternative Medicine 2017, 17(Suppl 1):317
    http://insight.cumbria.ac.uk/id/eprint/3074/1/Cox_FeasibilityStudy.pdf

    P119 Feasibility study for a community based intervention for adults with severe Chronic Fatigue Syndrome/ ME

    Clare McDermott1 , George Lewith1 , Selwyn Richards2 , Diane Cox2 , Sarah Frossell3 , Geraldine Leydon1 , Caroline Eyles1 , Hilly Raphael3 , Rachael Rogers4 , Michelle Selby2 , Charlotte Adler2 , Jo Allam2 1 Primary Care and Population Science, University of Southampton, Southampton, SO16 5ST, United Kingdom; 2 University of Cumbria, Carlisle, United Kingdom; 3 Rebuilding Your Life Project, Oxford, United Kingdom; 4 Oxfordshire CFS/ME Service, Oxford, United Kingdom Correspondence: Clare McDermott; George Lewith BMC Complementary and Alternative Medicine 2017, 17(Suppl 1):p119

    Background

    Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating fatigue with many bedbound patients. The study aims were
    To determine whether a new intervention could be successfully delivered. To collect quantitative outcome data to guide the design of future studies. To explore qualitatively the experience of patients, carers and clinicians.

    Methods

    Mixed-methods feasibility study with qualitative and quantitative evaluation.
    Participants: 12 UK patients who were housebound with severe CFS/ME.
    Intervention: Based on recovery skills identified through a 2.5 year Patient and Public Involvement development process involving individuals with first-hand experience of recovery from CFS/ME, as well as current patients and clinicians.
    The resulting one year intervention, delivered by a multi-disciplinary team, included domiciliary therapy visits and optional peer support group.

    Quantitative outcome measures:
    Patient-reported and therapist reported outcome measures (including fatigue, physical function, anxiety, depression and other variables) and electronic activity measurement.

    Results
    The study recruited and engaged twelve participants with no serious adverse events or dropouts.

    At end of intervention, 5/12 participants had improved in fatigue, physical function.

    Group mean scores improved overall for fatigue (Chalder fatigue scale), physical function (activity and physical function scale) and anxiety.

    Qualitative interviews suggested that the intervention was acceptable to patients, whilst also highlighting suggestions for improvement.

    Participants will be followed up for a further year to find out if improvements are sustained.

    Conclusion
    This is the largest study ever conducted in severe CFS/ME and shows significant recovery suggesting further studies are indicated. Treatment is uniquely based on a patient inspired intervention.
    ...............................................................................................

    This seems to be all the available information.

    I contacted the University of Cumbia data holder to try to get the data from this study, and was referred to Claire McDermott, one of the corresponding authors.

    She was out of the country at the time but said she would get back to me on return. She later said she was long term elsewhere and would pass my request on. I have heard no more. I note that the other corresponding author Dr George Lewith died earlier this year.

    I am now in a quandary as to whether to pursue this.

    Part of me says, it's junk, forget it. But if it's being spread like a toxic algal growth to other areas on the strength of this one preliminary study whose data is unavailable, this is troubling. I guess I'll have to try again to get the data.
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    George was once a good friend of mine but he got heavily into quackery. My hope is that whatever review NICE undertake it will at least identify the lack of valid evidence for LP. Even the CBT/GET people will want to ensure that. The worry is that ME/CFS management is widely delegated to OTs who may be allowed to muck about with whatever they like.
     
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  19. ladycatlover

    ladycatlover Moderator Staff Member

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    I'm guessing they might be My Little Ponies? ;)

    upload_2017-11-6_10-40-18.jpeg

    Though they look less like ponies now than they did when my girls had them back in the 80s! This looks more like a deer that has sprouted a mane. :sick: :arghh: :eek:
     
  20. ladycatlover

    ladycatlover Moderator Staff Member

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    Or you can have the best of both worlds... A unicorn pony with wings! :rofl:

    [​IMG]
     

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