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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Lightning Process to be Evaluated in Research Study on Children

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

  1. Bob

    Bob

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    Esther12 likes this.
  2. Bob

    Bob

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    Esther12 likes this.
  3. alex3619

    alex3619 Senior Member

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    I am still flabbergasted that SMILE is considered ethical.
    Min, peggy-sue, MeSci and 4 others like this.
  4. Bob

    Bob

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  5. Valentijn

    Valentijn Activity Level: 3

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    Min likes this.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

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    SMILE, children.
    You'll be FINE, citizens.
    Just keep up the PACE.
    Big Brother is NICE.

    I think George Orwell was prescient.
    Countrygirl, Bob, alex3619 and 8 others like this.
  7. A.B.

    A.B. Senior Member

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    I think the people promoting these "mind over matter" theories should take mood stabilizers before they do more harm.
  8. Snowdrop

    Snowdrop Senior Member

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    This and other behavioural concepts suffer from a dual personality.
    While on the one hand it frames the problem as one that can be solved in an easy happy, upbeat kind of way
    the evil undercurrent running through the minds of practitioners is just pull up your bootstraps, get on with it, it's all your fault, this could never happen to me.
    I forget which thread it was in now but there was mention of a lack of empathy that perpetuates this thinking.
    Physician heal thyself.
    Min, Cheshire, peggy-sue and 4 others like this.
  9. Tom Kindlon

    Tom Kindlon Senior Member

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  10. Dolphin

    Dolphin Senior Member

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    Includes 3 people with "CFS/ME" who got worse after LP

  11. Bob

    Bob

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    These are the Forward ME group minutes from 12th Feb 2014:
    http://www.forward-me.org.uk/12th February 2014.htm

    The discussions are mainly about important child protection issues and education, which are well worth a read.

    And there's also some discussion re the SMILE trial, which I've copied below:

    "...Dr Esther Crawley [...] said they would not be in a position to make any announcement about the SMILE project until at least September of this year."

    "Jane Colby expressed concern about the Collaborative, and its members’ agreement not to criticise the work of other members, particularly in view of the SMILE trial. She stated that The Young ME Sufferers Trust does not approve of or support the SMILE trial, and asked other Forward-ME members about their own position on it. Several members indicated that their organisations did not support LP. Dr Charles Shepherd said his position remained as it had always been. He had successfully reported the LP people to the Trading Standards Authority on several occasions and he remained critical of them. There should be no constraint on people criticising any research (including LP) at the Collaborative Conference. Mary-Jane Willows said she had concerns about LP but research was necessary and the SMILE project had been given ethical approval. Christine Harrison said that when they had been invited to join the Collaborative they had put on their application that BRAME only supported biomedical research. She reminded members that they had previously agreed that professional critique was acceptable whilst personal attacks were not."
    Min, Valentijn, Dolphin and 1 other person like this.
  12. Bob

    Bob

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    I think most of the attendees at the Forward ME group probably have similar views about the Lightning Process and the SMILE trial, except...
    I'm sure that most of you know...
    Mary-Jane Willows is the CEO the Association of Young People with ME (AYME) for whom Esther Crawley is a medical advisor.
    Valentijn and Dolphin like this.
  13. Cheshire

    Cheshire Senior Member

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    I don't think it has been posted elsewhere:

    https://www.academia.edu/2115489/Ex...myalgic_encephalomyelitis-a_qualitative_study


    p.13
    How ethical is it to place a child in such a situation????
    MeSci, Valentijn and Bob like this.
  14. Bob

    Bob

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    Thanks for posting. FYI, there are a couple of threads about this paper:
    http://forums.phoenixrising.me/inde...ing-process-to-treat-cfs-me-reme-et-al.21244/
    http://forums.phoenixrising.me/inde...ith-the-lightning-process-chalder-2012.19475/
    MeSci and Valentijn like this.
  15. Cheshire

    Cheshire Senior Member

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    Ok thanks! I haden't seen them...
    Bob likes this.
  16. alex3619

    alex3619 Senior Member

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    Its much older than that. This goes back to Machiaveli's The Prince. What matters is how things seem, not how they are, if you want to rule.
    Snowdrop and MeSci like this.
  17. Firestormm

    Firestormm Senior Member

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    For info. Bristol University website:
    barbc56 and Esther12 like this.
  18. Bob

    Bob

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    So, are they going to break the code and conduct the analysis, in that order?

    I wouldn't be surprised! :rolleyes:
    Last edited: Apr 9, 2014
    Valentijn likes this.
  19. Esther12

    Esther12 Senior Member

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    From the protocol:

    Didn't they fail to mention that LP was founded upon known quackery like osteopathy and NLP in their information for the children? (The patient leaflet has been posted here, but I can't find it now - sorry).

    @Bob : The feasibility paper said that analysis will be blinded.
    Snow Leopard, Bob and barbc56 like this.
  20. Bob

    Bob

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    Thanks Esther.

    Wouldn't it be nice if they stick to the protocol this time, instead of inventing the methodology on the hoof!
    I know, it's a controversial idea, so I'd best not hold out too much hope! ;)
    Last edited: Apr 9, 2014
    Valentijn and barbc56 like this.

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