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NHS Persistent Physical Symptoms website (North and West Cumbria)

Discussion in 'General ME/CFS News' started by Kati, Jul 12, 2017.

  1. Kati

    Kati Patient in training

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    (Not a recommendation)


    It started with a google alert which led me to this article:
    http://www.timesandstar.co.uk/news/...-pain-afbed80d-8434-4770-915f-27781c13f63f-ds


    And this led me to their website...
    https://ppss.cumbria.nhs.uk/


    and if you look down at the bottom of the first page, you will find this...
     
    Last edited: Jul 12, 2017
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  2. Esther12

    Esther12 Senior Member

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    How nice of them to provide anecdotes about recovery but no references to any credible evidence that they're able to help people recover.
     
  3. taniaaust1

    taniaaust1

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    Id like to know what percentage of ones who have seizures do they manage to fix their seizures without seizure meds? Maybe someone should mail them and ask them this, Id like to see what response they'd give.

    How about for IBS? How many of those have their IBS go away?

    This place sounds like miracle workers who are able to cure things not usualy at all fixable. I wonder if their miracle cure rate is on par with those who go to church and pray for a cure.

    Its irronic how medical places seem to be able to probably make all kinds of false claims about what they can treat and fix but if a non medical person made the same claims he'd be in trouble.
     
    Last edited: Jul 12, 2017
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I hope the good people of North and West Cumbria learn to avoid this service like the plague that it's likely to be.
    Just as an aside, I'm wondering if it would be prudent to start taking account of how many people PPSS covers. Are there really so many people out there with unexplained physical symptoms or is it just we pay attention to this so much?

    **There are times when I read this stuff and just want to scream 'make it go away'. Enough already.
     
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  5. taniaaust1

    taniaaust1

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    https://ppss.cumbria.nhs.uk/patient-stories listening to Simons Story of his recovery "now Im between 70 to 90% back to normal" (catches himself probably due to the brain washing) "and its more 80 to 90%"

    then he talks about his mountain climbing experience and says "I feel like Im completely recovered".

    So is he recovered? I think not. Is he counted then as one of their completely recovered ones? when he has 70-90% er 80-90% recovery?

    I wouldnt say he's recovered but he certainly seems better some probably due to they have taught him to stay in his limits (he did say they taught him his limits, other videos talk about pacing and mention the spoon thing, so many spoons per day). I do agree "good pacing" may aid "improvement" so maybe this service could help someone how isnt pacing themselves well.

    Lets not have the word "recovered" being used for people who are not actually recovered. (its bad for our politics to do so). We should protest every time its being implied someone recovered when they clearly have only improved
     
    Last edited: Jul 12, 2017
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  6. taniaaust1

    taniaaust1

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    Looking more at the videos it their therapy doesnt sound too bad, they are actually teaching by the sounds of it people to find their baseline and learn their limits and the importance of proper rest.. so I can see how some are "improving". I do think that some esp ones who still are pushing themselves a lot are worst then they would otherwise be due to not having proper rest periods in their day and not pacing well and trying to do too much.

    They are calling it pacing and its coming across as GET some but by the sounds of it it but may be more actually working out what your limits are for that point of time and pacing right. By the videos of people gone throu it, it sounds like they are teaching to accept ones limits (that's not a bad thing)

    I'll all for having people reduce pain killers as I think in some of us that reducing the pain by drugs can actually be harmful as it then allows us to do more then we should be actually doing ME wise, ignoring or blocking out ME symptoms often isnt a good thing. (its like those of us who take stimulants to get throu the day, this too can lead to us doing more then we should).

    Does that website actually talk anywhere about "curing"? (or does it only mention support and improvement?
     
    Last edited: Jul 12, 2017
  7. Esther12

    Esther12 Senior Member

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    They introduce their 'patient stories' with "Every patient is unique, with their own symptoms and ways of dealing with them. However, some of our previous patients wanted to share their experience of the service and their stories of recovery with you. We hope this will reassure you about how the service can help with your symptoms, too."

    Of Simon they say: "This is his story of recovery."

    For Julie's story they have: "This is her story of recovery and the tools she found most helpful."

    Then there is the "Why Emotional Support is Vital to Recovery" section.

    Unless they have good evidence that they can help people recover, their presentation of those anecdotes looks pretty dodgy to me.
     
  8. A.B.

    A.B. Senior Member

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    For anyone that doesn't yet know, persistent physical symptoms is a harmless sounding way to say somatization.
     
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  9. NelliePledge

    NelliePledge plodder

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    yep PPS is what the Medically Unexplained Symptoms people are changing it to now it has dawned on them that MUS as a term is something that could be used against them showing their insensitivity and lack of awareness of research findings

    all I can think of when I read PPS is FFS :whistle:
     
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  10. Snow Leopard

    Snow Leopard Hibernating

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    The website looks quite persuasive, I can see why people might be tempted to "Have a go" if they aren't the type of person to ask for scientific evidence.
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    Sigh. You'd think by now people would know persuasion is a sales technique it's meaningless blather.
    Time for a well placed article deconstructing the PPS market.
     
  12. lilpink

    lilpink Senior Member

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    Somebody I know has just summed up a major problem with PPS/MUS/BPS model quite amusingly with the acronym SSP –


    PPS risks/promotes SSP. Let me explain.


    A major problem with PPS is that it risks/promotes SSP of patients by their doctors. SSP stands for ‘Sudden-onset Swivel-chair Psychoanalysis’ …...I expect most people on PR have experience of SSP. The doctor has a lightbulb moment – ‘I haven't the foggiest what’s going on here....... [sudden lightbulb moment].....oh, my patient’s most likely one of those MUS/PPS psych cases….. I need to investigate this FAST’…..swivel….. ‘and face-to-face’ …..concerned look….... probing psych questions.


    Patient thinks…..’this is a bit of a weird tangent….I thought we were supposed to be talking about my pain/fatigue/odd symptoms……but they DO seem very concerned about me.’



    From the Cumbria PPSS video clips it seems that a fair proportion of the doctors featured may be predisposed to SSP (or pre-programmed even). Likely they’ve had little good (emphasis on good) psych training, but are fully charged with BPS propaganda from the ubiquitous MUS training sessions/conferences/workshops.
     
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  13. A.B.

    A.B. Senior Member

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    @lilpink A little joke: conversion disorder is when the doctor converts diagnostic uncertainty into certainty by convincing themselves that the patient must be communicating emotional distress through physical symptoms.
     
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  14. lilpink

    lilpink Senior Member

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    Yes ... but it's not much of a joke :( :bang-head:
     
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