Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Clinical and cost-effectiveness of the Lightning Process for chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 20, 2017.

  1. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,239
    Likes:
    31,952
    I am amazed. We have Morse, Poirot, Holmes and Marple on the case and they are still 'wrestling with the question' and it's my bedtime! Ah well, maybe it takes little longer. Maybe we need one of those FOI jobs.

    Only teasing. It does look seriously odd to me but I don't want to jump to conclusions and this sort of ferreting around dates is not something I am very good at personally.

    It might be possible to make enquiries to the editor of Archives of Diseases of Childhood if we are clear what the questions should be.
     
    Esperanza, MEMum, JohntheJack and 8 others like this.
  2. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,239
    Likes:
    31,952
    I think it is out of court completely if this is supposed to be a prospective controlled trial. As indicated above, it is fair to accumulate data if it is made clear that it is simply a practice report but not to analyse as if a prospective trial. In the past I do not think any editor would publish such a study, but things have changed dramatically in the last ten years.
     
    Esperanza, MEMum, Valentijn and 8 others like this.
  4. user9876

    user9876 Senior Member

    Messages:
    2,583
    Likes:
    18,182
    I think we may need an FoI.

    I'm assuming that it would not be normal for an ethics committee to approve an amendment to switch ethical approval from a feasibility study to a full trial?
     
  5. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,191
    How about we just ignore LP. Phil Parker will destroy himself soon enough. He is now trying to peddle LP for POTS.

    http://www.heartrhythmcongress.org/programme/02-10-2017/5

    Phil Parker is, in the words of Coyne, a "raving quack" and that should be painfully obvious to most people that matter. Crawley will go down with him if she continues to hold onto LP.
     
    Last edited: Sep 25, 2017
  6. cyclamen

    cyclamen

    Messages:
    24
    Likes:
    101
    I hope the cardiologist don`t fall for it. My last encounter with a cardiologist regarding POTS ended with her upbeat goog bye: "Just enjoy life and forget about your symptoms, they will be gone sooner than you think!"
     
  7. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    LOL - I'm such an idiot. I think that page must have been open from a while back, and I assumed it was a SMILE page. Will go back and edit. Luckily I hadn't thought this was a key piece of evidence!
     
    Valentijn, Wonko and Invisible Woman like this.
  8. Sea

    Sea Senior Member

    Messages:
    1,268
    Likes:
    2,650
    NSW Australia
    :aghhh::bang-head::bang-head::bang-head:
     
    MEMum and cyclamen like this.
  9. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    487
    Likes:
    641
    What country was that in?
     
    cyclamen likes this.
  10. cyclamen

    cyclamen

    Messages:
    24
    Likes:
    101
    Germany - und this was the rare cardiologist, who has known about POTS. This was the reason I went there.
     
    HowToEscape?, MEMum and Orla like this.
  11. anni66

    anni66 mum to ME daughter

    Messages:
    234
    Likes:
    889
    scotland
    Remember also that this is the land of PRS and social services involvement for non attendance. Given whom the trial was run by, presenteeism is virtually guaranteed.
     
  12. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,872
    I want to pass on to someone not on PR a link to information about the Lightning Process, particularly what it involves and patients stories of harms caused. I'm sure I've seen such a resource, but haven't found it. Can anyone help?
     
    MEMum, JohnM and AndyPR like this.
  13. AndyPR

    AndyPR Senior Member

    Perhaps not what you are thinking of but is this of use? http://me-pedia.org/wiki/Lightning_Process
     
    MEMum, trishrhymes and Wonko like this.
  14. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,872
    MEMum, Valentijn, JohnM and 1 other person like this.
  15. JohntheJack

    JohntheJack Senior Member

    Messages:
    185
    Likes:
    965
    Swansea, UK
    I don't. I have been digging around a little today but not found anything new. The protocol for the main study says:

    'Ethical review A favourable ethical opinion was given on 8 September 2010 (reference 10/H0206/32) by South West 2 Local Research Ethics Committee.'

    But the 08/09/2010 ethical approval states it is for the feasibility study:
    https://web.archive.org/web/2012102...ue/correspondencewithethics/applet14sep10.pdf

    There are, as you say, two later amendments:
    'Two favourable opinions have been provided on 31 May 2011 and 6 September 2012 for amendments to study documents and protocol.'

    These don't seem to be available.

    In any case, the final paper states: 'Between September 2010 and April 2013, we recruited participants.' So the final study dates back to the start of the feasibility study, immediately after the 08/09/2010 approval.

    One of the approvals was for a change in protocol. Could one have been to convert the feasibility study into the main study? Would that be an 'amendment to study documents'?

    Think I'll do an FOI for those amendments.
     
    Esperanza, slysaint, Hutan and 8 others like this.
  16. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Thanks for letting me know.

    In case of interest, the 2010 ethics submission is available here: http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/recfrmrfs.pdf

    This says:

     
    MEMum, Dolphin, Hutan and 3 others like this.
  17. dreampop

    dreampop Senior Member

    Messages:
    220
    Likes:
    525
    I haven't read the whole thread so I'm sorry if this is already covered. If the control arm (SMC) is meant to incorporate at least some response bias but the patient knows they are receiving supplementary treatment (SMC +LP) won't they be more likely to respond positively? There is a least some probability that any additional treatment (LP) will provide additional benefit.

    Seems like a particularly problem if the LP is attempting to modulate a person's response to illness (...a theory session with taught elements on the stress response, how the mind and body interact, and how thought processes can be either helpful or negative).

    What I'm trying to say is there is no control for response bias towards the LP treatment specifically (desire to please, demand characteristics) for a treatment that modifies response bias towards the disease.
     
    Last edited: Sep 26, 2017
    Esther12, Dolphin and MEMum like this.
  18. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    [QUOTE="dreampop, post: 912147, member: 25677"If the control arm (SMC) is meant to incorporate at least some response bias but the patient knows they are receiving supplementary treatment (SMC +LP) won't they be more likely to respond positively? [/QUOTE]

    Yup, you're right.

    It's possible that in this SMC vs SMC+LP trial, those who received only SMC received more CBT & GET (as a part of SMC) than those who were in the +LP group, but we don't know if that's the case as data on this has not been released.
     
    SamanthaJ, JohnM and AndyPR like this.
  19. Dolphin

    Dolphin Senior Member

    Messages:
    10,676
    Likes:
    28,192
    https://www.facebook.com/nancy.blake.9803/posts/10212755299070365
     
  20. anni66

    anni66 mum to ME daughter

    Messages:
    234
    Likes:
    889
    scotland
    This is the nub of the problem. There has been no elucidation of what constitutes the "Lightening Process" in the press. Did the REC committee know the details?

    For those with ME ( again a mixed bag selection criteria), this is dangerous. Kids who have been isolated and feel different anyway may have any underlying issues compounded by this process.

    It goes against all child protection principles
     

See more popular forum discussions.

Share This Page