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Tuller / Trial By Error: The Crawley Chronicles, Resumed

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Cheshire, Dec 13, 2017.

  1. Barry

    Barry Senior Member (Voting Rights)

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    I think principle is only ever a noun.
     
    Luther Blissett and Trish like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Barry- I beg your pardon. You are right. Said my brain was fried!
     
    Luther Blissett, Barry and Trish like this.
  3. Trish

    Trish Moderator Staff Member

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    On the sixth form issue - school sixth forms tend to require attendance for the full school day, colleges that only take post 16 students are more likely to register attendance at each lesson, so those only doing, say, 2 A levels (full time is normally 3 or 4 A levels) may only need to be in class for about 10 hours a week, and expected to work independently the rest of the time. I can see that this can be a problem in assessing school attendance when students transition from GCSE to A levels. However, percentage of expected attendance can still be calculated.
     
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    I've noticed MEA seem to have not been promoting Tuller's recent work on social media in the way they used to. That seems worrying.
     
    sea, Inara, ladycatlover and 8 others like this.
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    The A level issue would likely affect both arms of the trial to a similar extent. They could also have reported sensitivity analyses where the data was looked in different ways e.g. excluding those doing A levels.
     
  6. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I agree. I do believe it is time for CS to let go of his 'in the tent' argument but unfortunately, there is no sign of this. David Tuller's blogs have shone a light on what the BPSers are and have been doing which is nothing that benefits people with ME.
     
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Charles Shepherd said to me yesterday that he has being having a bit of a rest from social media with the other place debacle. However, he is now aware of the move to S4ME and I suspect will surface again in a while.
     
    sea, Inara, Snow Leopard and 26 others like this.
  8. Sean

    Sean Moderator Staff Member

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    Tax-free and all!

    This kind of stuff is just fucking disgraceful. :mad:
     
    Inara, ladycatlover, MeSci and 11 others like this.
  9. large donner

    large donner Guest

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    This all makes you wonder why this wasn't all accounted for in the study design, its bizarre. Why didn't they design the study to measure like for like. Instead they chose to change the protocol half way through using bizarre reasoning like, we cant measure objective attendance because people have to attend for different amounts of time.

    Surely that still confuses things in the self reports of attendance also?
     
  10. Trish

    Trish Moderator Staff Member

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    As others have pointed out elsewhere, school attendance is also problematic because a sick child may feel forced to attend, especially if told in LP that they have to 'act well', but may sit slumped in a chair unable to concentrate on anything, and lie down as soon as they get home and all weekend. It is not necessarily a measure of energy levels or expenditure. She really should have used actometers. There is no excuse.

    But the main point of Tuller's piece is a killer - she should never have included her feasibility study patients in the main study, especially when she changed the primary outcome measure after the feasibility study.
     
    sea, Inara, Zombie Lurker and 22 others like this.
  11. Sbag

    Sbag Senior Member (Voting Rights)

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    the other problem with using teenagers might be that their bodies are going through so much change anyway, that self reporting on how tired they feel is going to be even less accurate. Therefore this would imply that there is even more of a need for proper scientific/biological results to illustrate any improvements.
     
  12. Allele

    Allele Senior Member (Voting Rights)

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    It's not like she's operating in a vacuum. Where is the oversight when designing and funding a study like this?
    More people are complicit in this fiasco.
     
    sea, Inara, Barry and 12 others like this.
  13. guest001

    guest001 Guest

    I think it's all in the spelling. She's still 'practising' with a 's' ;) :emoji_face_palm:
     
  14. guest001

    guest001 Guest

    Completely agree ..it's bizarre. Cognitively dissonant.
     
  15. Wonko

    Wonko Senior Member (Voting Rights)

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    It might be a pity that she is not, operating in a vacuum ;)

    If she was, operating in a vacuum, then it would be more difficult for her noises to influence people, or her studies.

    I leave the choice of which meaning of "vacuum" to others to figure out. For all I care she could be operating in a vacuum, which is itself, in a vacuum, although one with a plug socket :devilish:
     
    Inara, Barry, Invisible Woman and 7 others like this.
  16. Allele

    Allele Senior Member (Voting Rights)

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    Holy cow, @Peter Trewhitt 's comment over there eviscerates the logic-loop that the trial is. Totally brilliant.
     
  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I have had problems with comments on the Virology Blog being deleted as spam, and David suggested breaking this one up, so here it is as a single comment that hopefully is easier to read than in the three parts that appear there:

     
    Last edited: Dec 14, 2017
    sea, Inara, ukxmrv and 31 others like this.
  18. Barry

    Barry Senior Member (Voting Rights)

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    OMG - you live and learn.
     
  19. Barry

    Barry Senior Member (Voting Rights)

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    Pondering this earlier today, I begin to wonder if this necessarily is all premeditated, as I've tended to think. Maybe a major factor really is just sheer lack of professional competence. Maybe they just don't have a clue how to run clinical trials. It's as if they just slept through those aspects of their education, or thought it didn't matter. How can else can they so blatantly fly in the face of established scientific wisdom?
     
  20. Esther12

    Esther12 Senior Member (Voting Rights)

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    I think it's really easy for patients to underestimate how much incompetence and laziness there is in medical research. It's so important to us to get to the truth... but for some researchers, this is just a job.
     

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