1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
No Longer Naive in the Ways of The Beast
After having lived for years with ME/CFS, Jody Smith learned there's more to this beast of an illness than she realized, and that what might help one person may not help others ...
Discuss the article on the Forums.

Lightning Process to be Evaluated in Research Study on Children

Discussion in 'General ME/CFS News' started by Jenny, Mar 4, 2010.

  1. Esther12

    Esther12 Senior Member

    Messages:
    5,176
    Likes:
    5,166
    Well, this time they did a 'feasibility' study with the first part of the trial, to let them have a look at some results, change their primary outcome measure, and then publish a protocol (I think that is right - this is from memory and it feels a little vague: I think that they moved to SF36PF and away from school attendance).
    Last edited: Apr 9, 2014
    Valentijn, barbc56 and Bob like this.
  2. barbc56

    barbc56 Senior Member

    Messages:
    1,355
    Likes:
    719
    I would assume that the name"Lighting Process" has a copyright. If it is, does that mean Phil Parker gets residuals from using the name?

    Barb
  3. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    It's an interesting question. I don't know the answer.
    Would the NHS have to pay him, if it recommended his therapy on the NHS? I imagine that it would.

    I'd like to follow the money trail for the SMILE trial.
  4. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,967
    Cornwall England
    To be fair, I haven't heard any objections from Phil Parker against this Trial and I doubt if many 'nutritionists' would be willing to open themselves (or their businesses) up to science: even science of this nature.
    barbc56 likes this.
  5. Esther12

    Esther12 Senior Member

    Messages:
    5,176
    Likes:
    5,166
    I was just reading transcripts of some meeting where Crawley was talking about the LP therapist she was working with being 'very good'. It's not like she's going in as a debunker.

    I reckon lots of nutritionists would be keen on an unblinded trial for UC+nutrionist vs UC where outcomes were assessed with questionnaires. Sounds like exactly the sort of thing that would provide them with a false sheen of respectability.
    Min, Valentijn, Cheshire and 3 others like this.
  6. barbc56

    barbc56 Senior Member

    Messages:
    1,355
    Likes:
    719
    @Firestormm

    Phil Parker also runs(ran?) a dating site.

    Sorry about that and I don't mean to make light of the situation. It would be very interesting to see if he has made any comments about the use of his process in this trial.or if he was consulted in any way. I would think to be a real lightening processer,:rolleyes:, you would have to have some sort of training. AFAIK, you can't just pick up a book of instructions and have the treatment called Phil Parker treatment.

    Would this be available through the trial protocol? Do we even have that?

    While I doubt this is some giant kind of conspiracy, it certainly piques my curiosity. Phil Parker's technique at least as it is used in other settings is, well, pretty disgusting exploitative, but that is my opinion.

    If it had been other types of "get off your butt, quit whining and you have the power to change your situation", I would still be skeptical, but using Phil Parker's process is lower than low.

    Now I need to do my homework so I can back up my points in the above paragraphs. I guess it beats washing my dishes!:eek:

    Barb

    Edit. Deleted a comment that I thought was funny at the time but now I don't.
    Last edited: Apr 9, 2014
  7. barbc56

    barbc56 Senior Member

    Messages:
    1,355
    Likes:
    719
    @Esther12 , we crossed posts and you answered one of my questions. Usually, I will see a message that someone has posted and do I want to read it before I submit my post, but not this time. Unless your post was already there and if it was, I'm foggier than I realized.:)

    Barb
    Esther12 likes this.
  8. barbc56

    barbc56 Senior Member

    Messages:
    1,355
    Likes:
    719
  9. Esther12

    Esther12 Senior Member

    Messages:
    5,176
    Likes:
    5,166
    I'm that quick!

    I don't actually see which of your questions I answered, but pleased to be of some use. The LP therapists being used are LP therapists, not NHS staff trained in LP. I think PP will maintain control over everything.
    barbc56 likes this.
  10. barbc56

    barbc56 Senior Member

    Messages:
    1,355
    Likes:
    719
    You had posted and somehow I missed it. The question you answered had to do with the training of the "therapists" used in the trial.

    Barb
    Esther12 likes this.
  11. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Another good question. I'm pretty sure that the nature of the therapy has not been detailed in any of the documents that have been made public so far. I don't remember seeing it anyway, and I've been looking out for it.
  12. Bob

    Bob

    Messages:
    7,955
    Likes:
    9,894
    England, UK
    Phil Parker is probably desperate to get his therapy authenticated in a free medical trial. It would be an unimaginably huge gift to him. And as Esther said, this trial has not been designed to fail. There is no placebo control, and outcomes are measured via subjective changes. Yes, there is a risk that it will fail, which would set his business back somewhat. But that risk has been minimised by the trial methodology.
    Last edited: Apr 9, 2014
    Roy S, Sean, Valentijn and 1 other person like this.
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,176
    Likes:
    5,166
    A peer reviewer for their feasibility study mentioned this, and Crawley said that information would be included in a alter publication. It will be interesting to see how a copyrighted 'black box' behavioural intervention will be dealt with by the processes of science and the need for independent replication.
    Min, Bob and barbc56 like this.
  14. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,967
    Cornwall England
    Just out of interest - how might you blind controls in a trial such as this with a 'therapy' such as this?

    I guess you could 'fake it' or get the kids to practice relaxation therapy or something... then the outcome would be compared to 'listening to relaxing music'.

    Wonder how LP would stack up against CBT - if that were used as a 'control'.
  15. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,261
    Likes:
    1,658
    Australia
    Maybe he knows something we don't.
    MeSci and Sean like this.
  16. Sean

    Sean Senior Member

    Messages:
    1,178
    Likes:
    1,829
    Reality will make a cynic of you yet, SL. ;)
  17. Sean

    Sean Senior Member

    Messages:
    1,178
    Likes:
    1,829
    From the link:

    "What we need to see are well-designed scientific studies that eliminate self-deception and isolate in specific ways what counts as success due to the training methods."

    Instead we get loaded trials of this LP shit, and PACE, both of which seems to have been specifically designed to encourage self-deception, in patients, therapists, and researchers.
    MeSci, Valentijn, Min and 1 other person like this.
  18. manna

    manna Senior Member

    Messages:
    332
    Likes:
    197
    you cannot objectively question an LP'er on the subject because they have to spin it positively to help it work.
  19. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,967
    Cornwall England
    Like I have said many many many times before, if someone was willing to pay for me to attend these sessions - and I was able - I'd give them a whirl and tell everyone about it afterwards.

    If someone feels they have recovered by this, or any other method - be it medical treatment or therapy or 'quack' treatment - I dare say the individual doesn't give a fig as to the scientific value of it, placebo or otherwise.

    That said, this Trial sucks. I'd forgotten the details. But I am not opposed to it being done on kids - not when so many are seemingly being fed like cannon-fodder to this commercial venture: must cost the parents a fortune!
  20. A.B.

    A.B. Senior Member

    Messages:
    567
    Likes:
    1,546
    I think the insistence on doing studies on children is because children are more susceptible to the placebo effect, less likely to question the whole thing, more likely to respond as they're told to, etc.
    Sean and Valentijn like this.

See more popular forum discussions.

Share This Page