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Unidentified (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics, 2011, Crawley et al

Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Nov 14, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    Open access, https://bmjopen.bmj.com/content/1/2/e000252

    Reason for posting above
    https://bmjopen.bmj.com/content/9/11/e000252corr1

    @dave30th
     
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  2. Adrian

    Adrian Administrator Staff Member

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    Is that true?

    I didn't think that the Ethics committee were asked about data from children and young people?
     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Service evaluation...
    Who is pulling strings?
    This will be very embarrassing when the saga of the emporer' s new clothes finally hits home.
     
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Is this the original reference number to the letter relating to anonymous service evaluation of existing adult service provision that Crawley inappropriately used for the eleven separate studies recently investigated by Bristol at the instigation of the HRA?

    I am not on the ball today, but did that investigation go as far as saying that this original letter was appropriate justification for avoiding any ethical approval for this research evaluating a paediatric screening service?
     
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  5. NelliePledge

    NelliePledge Moderator Staff Member

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    if that is supposed to be new wording in response to the investigation it is yet more fudge
     
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes
    07/Q2006/48
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    David Tuller's blog: Today I can disclose that the scrutiny involves papers linked to a specific research ethics committee (REC) reference: 07/Q2006/48. That is the number of a 2007 REC opinion issued for a study titled “What happens to children with CFS/ME? The study of a longitudinal cohort of children who access a paediatric CFS/ME service. Version 2.” The investigators were seeking permission to add some more questionnaires to those already being filled out by (or about) pediatric patients at the specialized Bath clinic run by Professor Crawley.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    Hold up isn't that the complete opposite? That the review panel has found that ethical approval should have been sought because it should have been classified as research? Which it clearly was. Do service evaluation even need to get REC approval? The original article is still classified under pediatrics research!

    When you read the original article, the summary is literally "hypothesis" and "research question".

    What is this double-whitewash nonsense? Those are not the droids we are looking for? That Jedi mind trick does not work in this universe, all it adds up to is literal hand-waving. Yet again those magical optional requirements that BPS research is exempted from.
     
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  9. dave30th

    dave30th Senior Member (Voting Rights)

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    Exactly. This is of course a main point I'll make in appealing the decision. It's really absurd for this paper to suggest it should or could be exempt from ethical review.
     
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  10. AllenJB

    AllenJB Established Member (Voting Rights)

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    Is the rate of ME in Britain increasing? Particularly with respect to children?
     
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