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Experiences of Young People with the Lightning Process (Chalder 2012)

Discussion in 'Latest ME/CFS Research' started by Simon, Sep 21, 2012.

  1. Simon

    Simon

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    Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis – a qualitative study
    Silje Endresen Reme1,* Nicola Archer2, Trudie Chalder2

    Objectives
    Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious condition characterized by debilitating but unexplained fatigue. Treatment alternatives are few, and especially so for young people. The aetiology of CFS/ME is still unclear and controversial, but rehabilitative interventions seem so far most promising. The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published. It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy. The aim of this study was to explore the experiences of young people with CFS/ME after they had undergone the Lightning Process.

    Design
    Qualitative research study.

    Methods
    Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14–26, who had undergone the treatment, and three of their parents. Inductive thematic analysis was used to evaluate the content of the interviews.

    Results
    Mostly positive experiences were reported of the Lightning Process. Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved. Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned. Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.

    Conclusions
    As this is the first report of young people's experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME.

    Statement of contribution
    What is already known on this subject? Treatment alternatives for people with CFS/ME are few, especially for young people. The Lightning Process is a popular treatment programme that has recently become available, but no studies involving the treatment have yet been published. Feelings of blame or dismissal in CFS/ME patients lead to withdrawal or disengagement from professionals.

    What does this study add? The Lightning Process for young people with CFS/ME encompasses many positive aspects, particularly the practical aspects of the treatment programme. The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.

    Quick comment by me: edit: deleted as I don't think it was accurate.
     
  2. Sparrow

    Sparrow Senior Member

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    Makes sense to me. It centres around reducing the stress response, doesn't it?

    Stress does seem to be one of the triggers for crashes. So if you avoided more stress, you would have fewer crashes. That part can be true.

    But you would still have the illness. And if your case was bad enough that the backslides you suffered due to exercise, or mental activity, or other factors were noticeable and still debilitating, you'd still be profoundly ill.

    I also wonder how many of those young people recovered not because of the process, but just because their bodies went into a temporary remission. I know that mine did at that age, without any medical intervention at all. Unfortunately the period after that was a gradual slide back down.
     
  3. PhoenixDown

    PhoenixDown Senior Member

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    So what was the sample size? How did they measure improvement? What was their activity level before and after? How much did their PEM improve? How much activity can they now do without worsening pain or fatigue?

    Seems like the authors are not interested in asking the right questions.
     
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  4. Sasha

    Sasha Fine, thank you

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    Can't see anything on what selection criteria they're using for patients.
     
  5. Simon

    Simon

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    Good point that with such a young sample there would be a high level of improvement - and of course there was no control group.
    Sample size was n=9. To be fair, it was specifically a qualitative study often done as the first step of testing a therapy to look for ways to improve the therapy, not a quantitative study to look at its overall effectiveness: the study was far too small for that.

    Looking at it more carefully, the sample was not random so the proportion of improvers vs unsatisfied isn't meaningful
    Those who had particularly good or bad experiences are more likely to reply than those for who had a moderate experience.

    Seems to me a fair enough start, but it really is just dipping a toe into the water. The very good/very bad experiences reported to tally with anecdotes, but bigger and systematic stuides would be needed to measure effectiveness. I'd rather the Lightning Process was studied in research than ignored, leaving proponents to make whatever claim they want about LP.
    Don't know, but my guess is "whatever".
     
  6. Bob

    Bob

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    Usually I'd agree with that, but I don't agree with testing the Lightning Process on children, especially children with ME, because of the potential long-term physical and psychological damage it could cause.

    There could be physical damage, because, as we all know, ignoring our symptoms can result in serious damage.

    And there could be psychological damage, because LP trains people to ignore their physical sensations, symptoms and illness. This could have a number of potential detrimental psychological effects. Firstly it trains children to dissociate themselves from their bodies, and physical sensations. This could potentially result in all sorts of unexpected psychological issues arising later in life. Secondly, it trains children to ignore feelings of exhaustion and pain. This could have all sorts of consequences, as pain and fatigue are evolutionary protective mechanisms for the body. Thirdly, by teaching children that their illness and symptoms are not of any real consequence, and that there is nothing really wrong with them, it undermines and invalidates their personal experiences, thus teaching them that they don't experience reality in the way that other people do, and that their personal experiences do not have the same worth or credibility as other people's experiences. It seems very undermining.

    Also, if a child reports that they feel better, is this really the case, or are they just saying what they think everybody wants them to say? Children naturally try to fall in line with what they are taught, so if they are taught that it is preferable to say that they feel positive, then that's what they are likely to say. They will say what pleases the adults who are training them.


    The validity of the results of an LP trial also depends on whether they are using subjective or objective assessments.
    From what I understand of it, the Lightning Process is little more than a positive thinking training course.
    Participants are taught to train themselves to ignore their symptoms, and to have a positive attitude, or to feel positive.
    So if the main measures of success in the trial are all subjective, as they were with the PACE Trial, and a participant reports that they feel better, have they really improved or have they just learned to ignore their symptoms and to say that they feel better despite their pain etc?
    So I think that a trial using subjective measures is deeply unhelpful and could be very misleading.

    If the results come back positive, and they only used subjective measures, then ME patients, including very vulnerable children, are going to be continuously told the LP is a good thing, and persuaded and coerced to undertake a course, and then blamed if they don't complete the course, or don't cooperate, or don't get well.

    But for ME, positive thinking is not going to be any more helpful at improving the disease than it would be for AIDS or MS, for example. We know that already, and we don't need a trial to inform us, just as we didn't need the PACE Trial.


    My most immediate concern is for the safety of the children being subjected to such a psychological training course.

    I think it is negligent to expose children with ME to LP. I think it lacks compassion and empathy, and is ill-informed, stupid or arrogant. It is potentially dangerous. I understand why desperate and under-informed parents might want their children to attend such a course, but members of the medical profession should know better, and should be protecting parents and children from potentially dangerous practises.
     
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  7. SOC

    SOC Senior Member

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    I agree. As far as I can see, there's no reason to use children in this research rather than adults except that children can be more easily bullied and manipulated by adults.
     
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  8. Sean

    Sean Senior Member

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    Words cannot express how angry I feel that a single penny of precious research or clinical funds, or a single jot of patients' already very limited time and energy and hope, was wasted on attempting to legitimise this blatantly fraudulent, abusive pseudo-scientific drivel.

    It is one of the greatest hypocrisies and scams I have ever seen from so called mainstream medicine.
     
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  9. Simon

    Simon

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    I see your point, but at least in this case the research was on people who had already done LP of their own choosing.Maybe from an ethical perspective the way forward is a systematic follow-up of people who have also already done LP by choice. I do think getting hard data on the LP would be very valuable.

    I personally am a huge sceptic about the LP and have numerous people try to foist it on me. By chance, there was an LP course in the small town where I live and out of curiousity I phoned up the LP practitioner to ask if they could accomodate me. It was a 5 hour a day course for 3 days, way more than I could manage. Basically he told me that after a couple of hours of the course I'd find that, in fact, I would be able to manage the course. 'Trust me' he said, knowing almost nothing of my condition. So I thought it was reasonable to ask if he would refund the fee if I had a relapse by trying to take the course (pretty generous of me, I thought, given how much a relapse would cost in human terms). Tellingly, despite his apparent complete confidence in his claims, he wasn't willing to agree.
     
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  10. biophile

    biophile Places I'd rather be.

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    A rapid enough recovery so that you could manage the rest of the 3 day course?

    "Trust me with your $1000 and your health", said the spider to the fly.
     
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  11. Bob

    Bob

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    Yes, this study was not putting children at immediate risk, but Esther Crawley is coordinating the SMILE trial, which is a proper trial of LP for children.
    It wouldn't be quite so bad if they were investigating adults.

    Yes, it would be valuable to be able to demonstrate that LP isn't a medical treatment, just so we don't have to hear about it any more. But should we really be investing money in this sort of thing? Do we really need a medical trial to find out if positive thinking improves a neurological disease? It's almost as if the enlightenment didn't happen, and we didn't learn any science over the past couple of centuries. This is non-science. It's little different to faith healing or 'curing' gay people with aversion therapy. Can AIDS be cured by positive thinking? Can Parkinson's disease be cured by positive thinking? etc.

    Sorry, I'm ranting a bit now. But it is a ridiculous situation.

    Yes, if they offered a dissatisfaction refund to all customers, then I wouldn't have quite such a problem with adults attending the course.
    If a practitioner sees 10 patients a week, at £800 each, then that's £8000 fees a week in total.
    That's £416,000 a year per practitioner. Not a bad little earner, for someone who has never done any medical training.
     
    Last edited: Mar 18, 2014
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  12. taniaaust1

    taniaaust1

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    I wonder if Trudie Chandler wants to this to be a good money earner to add to her therapies she does.
     
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  13. Esther12

    Esther12 Senior Member

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    This from Chalder is a good reminder of how close her approach is to the quackery of the Lightning Process.

    http://www.newsavoypartnership.org/2011presentations/prof_andre_tylee_and_prof_trudie_chalder.pdf

    If someone were selling me a treatment for 'recovery', I would expect it to allow me to be able to return to my previous lifestyle and be free of the symptoms of the illness. We've seen how psychosocial researchers are now trying to re-define 'recovery' in ever more absurd ways as they come to realise how poor their treatments are at leading to real improvements - these sorts of manipulative word games are exactly the sort of 'positivity' Phil Parker and his ilk make their money from.

    Edit: I've saved a copy of this, if it goes offline, 'prof_andre_tylee...' - if it goes offline, feel free to PM me.
     
    Last edited: Dec 7, 2013
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  14. biophile

    biophile Places I'd rather be.

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    Good point Esther12. Chalder's statement is odd because usually they have ignored behavioural definitions of recovery and focused on self-reported symptoms only, arising in the ridiculous situation where people can be disabled and recovered at the same time. Now it is the other way around where as long as people reach normal pre-defined normal behaviour it is possible to be recovered despite major symptoms? Although part of her definition is probably trying to account that not everyone who recovers from CFS is going to have perfect health, just as many otherwise "healthy" people in the general population are not free from occasional symptoms.
     
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  15. Sean

    Sean Senior Member

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    Hence their extensive use of objective measures to determine concrete behavioural changes.

    [sarcasm off]
     
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  16. Esther12

    Esther12 Senior Member

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    I expect she's thinking of 'behaviour of not thinking one is sick', 'behaviour of not bothering ones doctor', 'behaviour of not believing one is deserving of assistance', etc.

    Not 'behaviour of going out drinking and dancing all night', which is what I'm after.
     
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  17. Tito

    Tito Senior Member

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    Does this study mention WHEN patients reported their positive experience?

    I ask because I read a while ago the story of a guy who had the 3-day treatment and who felt wonderful afterwards... Until a massive crash hit him pretty badly two or three months later. He explained during the course you do things and they make you believe that you are capable of doing them any time. You then become euphoric because you suddenly feels your life is back. That euphoria drives you to maintain that new level of activity... Until you crash. That guy even explained that he posted on their website a positive report just a month after the treatment. He later regretted it.
     
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  18. Bob

    Bob

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    Last edited: Mar 18, 2014
  19. Bob

    Bob

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  20. peggy-sue

    peggy-sue

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    Quite apart from all the usual issues, I take great exception to this statement from the paper.

    "Treatment alternativesare few, and especially so for young people." (bolding mine)

    Not, they're not "especially few" for children or young people.

    There are especially few treatments for anybody and none of them worthwhile.
     
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