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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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SMILE - Lightening Process - Trial Feasibility Study Published

Discussion in 'Latest ME/CFS Research' started by Firestormm, Dec 6, 2013.

  1. Esther12

    Esther12 Senior Member

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    This is the reasoning they gave:

    I totally agree with @wdb 's citing of that thread.

    School attendance was never a great outcome measure, but it's a lot better than SF36-PF and Chalder Fatigue Scale scores. Measuring the supposed efficacy of something like the Lightning Process with self-report questionnaires is just a joke. nIf they wanted a more comprehensive measure of activity, they should have used actometers.

    This is from the paper:

    Is there any evidence that these claims are true? Does LP train train individuals to recognise when they are stimulating or triggering unhelpful physiological responses, and avoiding them? Is it not unethical and repulsive to claim that it does without good supporting evidence?

    Here's the info that was given to the kids (they avoid mentioning the obviously quacky NLP and osteopathy):

    http://meagenda.wordpress.com/2010/09/16/smile-–-specialist-medical-intervention-and-lightning-evaluation-documents/

    In these sessions, do the kids really learn about how the mind-body interacts and how thought processes can be helpful and unhelpful? Is there good evidence to support the claims that are made to them during these sessions? Or is it just misleading quackery? The Advertising Standards Authority seems to think that there's rather too much quackery in some of the claims made by Phil Parker and his followers.
     
    Last edited: Dec 6, 2013
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  2. Simon

    Simon

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    that was my take on this included in the full text abstract:
     
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  3. Dolphin

    Dolphin Senior Member

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    Thanks. I'd missed that. So it looks like maybe we won't get outcome data from the feasibility study.
     
  4. lnester7

    lnester7 Seven

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    Here is what I understand of the psy studies. Now with the whole OIM things coming to life, what they do makes much sense, a paper is a paper, no matter how much we disagree or how controversial it is.

    They know how to play the game (the phsy group), publish, confirm studies no matter how ludicrous it is. Then when fight comes to it, they are the only ones doing the things that at the end politically and bureaucratically will count.

    While we participate we are our own enemies. WAKE UP PEOPLE.
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I am with those who believe that it is unethical to brainwash children.
     
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  6. barbc56

    barbc56 Senior Member

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    Phil Parker is a known scam artist. (mods. feel free to delete my strong language.):D

    I used to have a file on him but can't find it, atm, but when/if I do, will post.

    My question is if he is making any money for giving permission to use his so called protocal as I think it is patented/ copyrighted/licensed.
     
  7. alex3619

    alex3619 Senior Member

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    I think he wants "scientific" respectability, as a positive result will allow him to make claims of scientific evidence in a clinical RCT, which also gives him a claim to be evidence based.

    I don't consider such subjective studies to be sufficiently valid to be considered an RCT without downgrading the evidence grade to the lowest available.
     
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  8. Bob

    Bob

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    I think a trial of LP on children with CFS/ME is one of the most disgraceful and unethical things that I've seen in the field of ME. (And that's not an easy accolade to achieve!)

    I'd like to see child developmental behavioural specialists carry out a safety audit on LP for children before this trial goes ahead.
     
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  9. Bob

    Bob

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    Yes, it would be an enormous coup for Parker if this study achieved positive results. LP would then be (legally) widely promoted as a successful treatment for children with ME. It would perhaps also mean that the NHS would pay him to use LP as an NHS therapy.

    And, as we know from PACE, it's very easy for an open-label trial to achieve subjective improvements, even where there are no objective improvements.

    I'd like to see the trail of money for this trial. (i.e. who has received money from whom.)
     
    Last edited: Dec 7, 2013
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  10. Dolphin

    Dolphin Senior Member

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    Saw a psychologist with ME post this elsewhere:

     
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  11. barbc56

    barbc56 Senior Member

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  12. Bob

    Bob

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    This isn't new, but I'd forgotten about it, so perhaps others have forgotten as well.
    It's a letter published in the Church Times (of all places) in 2010, about the trial:

    ‘Children should not be used as guinea pigs’, Church Times, 8 Oct 2010
    From the Church Times, 8 October 2010
    Clinical trials of a training programme for ME, MS, and other conditions raise serious ethical questions, argues Robin Gill.

    http://www.meassociation.org.uk/201...-used-as-guinea-pigs-church-times-8-oct-2010/


    (BTW, it includes a reference to Esther Rantzen (a UK TV & radio presenter), who used to promote LP, as she claimed that her daughter, who was diagnosed with CFS, benefited from it. They found out years later that her daughter actually had ceoliac disease, and not CFS.)
     
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  13. barbc56

    barbc56 Senior Member

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    Big red flag here:

    http://www.lightningprocesshelpedme.com/discussion/comment/185http://www.lightningprocesshelpedme.com/discussion/comment/185

    I just had to post this. Now I will try to get back to the topic of ethical/science issues.
     
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  14. alex3619

    alex3619 Senior Member

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  15. alex3619

    alex3619 Senior Member

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    Yes, if not at school they are not well. However even if back at school they might not be well. So many of us can attend, but are we paying attention? Can we focus? Can we think? Can we get involved? Its more than just attendance. What happened to their grades?
     
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  16. leela

    leela Slow But Hopeful

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    It's ironic, because usually the hypnotic brainwashing is "You are getting veeery sleeepy."
    o_O
     
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  17. Sean

    Sean Senior Member

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    Utter disgrace that this drivel gets a penny of precious research or clinical funds, especially to be inflicted upon children.

    A shocking example of how far off the rails this area of medicine has gone.
     
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  18. Simon

    Simon

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    Worth noting what the paper says about this:
    I think there is something in this, but also agree with you that an objective measure is needed too, such as actometers. I'd also like to see the outcome data for school attendance vs SF36 etc, in case this was a factor in the authors' plan to downgrade school attendance to a secondary outcome.

    Here's an example of a motion-sensing device shown to accurately measure total energy expenditure in people in normal life (as opposed to rather meaningless studies showing actometers are good at measuring treadmill activity):

    Evaluation of a portable device to measure daily energy expenditure in free-living adults
    Results: Mean estimated daily EE measured with the armband was 117 kcal/d lower (2375 ± 366 kcal/d) than that measured with DLW (2492 ± 444 kcal/d; P < 0.01). Despite this group difference, individual comparisons between the armband and DLW were close, as evidenced by an intraclass correlation of 0.81 (P < 0.01).
    Correlation of 0.81 is very high (0-1.0 scale), and the "DLW" method is the gold standard for measuring energy expenditure so this is a good study.
     
    Last edited: Dec 7, 2013
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Another thing that really worries me is that if this trial is claimed to be a 'success', parents may be forced to have their children subjected to it under threat of being charged with child abuse/neglect, diagnosed with Munchausen's Syndrome by Proxy and/or having their children taken away.
     
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  20. user9876

    user9876 Senior Member

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    I doesn't even need to be a direct threat. Esther Crawley has quite a reputation. I did hear that her clinic was dropping 'non-complaint' patients from one of the therapists working there. This creates a situation where parents may feel have to take part or they will be dumped on unsympathetic GPs. I also hear rumors that Crawley is dropping the ME diagnosis for some of the more severe patients and suggesting PRS.

    This adds to pressure not only to take part in the trial but to give better results (including feeling forced to increase school attendance) for the favored treatment.

    If I was designing such a trial I would be careful to add in privacy preserving properties so that the doctors don't know which results apply to a given patient.
     
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