Tuller / Trial By Error: The Crawley Chronicles, Resumed

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.
 
Esther12 said:
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.
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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.
 
Esther12 said:
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.
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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.
 
Barry said:
Quite so. He's doing some excellent peer reviews of her work.
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Tax-free and all!

*Based on the revised primary outcome of self-reported physical function, the full-trial paper reported that the Lightning Process combined with specialist medical care was effective in treating kids with CFS/ME. The full-trial paper also reported that school attendance at six months–the original primary outcome in the feasibility study—produced null results. Thus, the outcome-swapping that occurred after more than half the full-trial sample had already been recruited for the feasibility study allowed Professor Crawley to report more impressive results than had she retained the six-month school attendance measure as the primary outcome.
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This kind of stuff is just fucking disgraceful. :mad:
 
Trish said:
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.
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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?
 
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.
 
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.
 
Allele said:
It's not like she's operating in a vacuum.
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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:
 
Allele said:
Holy cow, @Peter Trewhitt 's comment over there eviscerates the logic-loop that the trial is. Totally brilliant.
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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:

My understanding is that the Lightening Process instructs people with ME/CFS, when asked, to say that they are well, regardless of what symptoms they are currently experiencing, they are instructed to deny the existence of their condition. Effectively they are being instructed to lie. If this was included in the 'training' provided in this trial, it raises a number of potential problems:

i. In this study one presumes that the funding bodies, the University of Bristol and the NHS all are effectively supporting a study instructing participants, who are children with a medical condition, to lie about their symptoms. If this had been done with any other potentially deteriorating condition, for example cancer or muscular dystrophy, it would have stirred a national scandal. On what planet is it ethically acceptable to instruct children to lie about the symptoms of a medical condition. This has very worrying implications for the future treatment and management of individual participant's condition. How do you effectively treat or manage a condition when the patient is potentially lying about their symptoms.

ii. I understand, if there could be any doubt, from previous comments in other forums by people involved in child protection that instructing children to lie should be an absolute no no and raises many child protection issues.

iii. Over and above the methodological problems of using subjective measures in open label trials, this study contains an internal logical contradiction. If the Lightening Process is to be considered successful presumably participants need to implement the instructions, so if the process is to be considered successful then we must expect participants will lie about their symptoms, so if it is successful the results of any subjective measure can not be believed.

(The only hope for the children in the study is that they may not all have had ME/CFS, as Prof Crawley has a history of compounding the symptom of chronic fatigue, which can be associated with many varied conditions, with the specific medical condition of Chronic Fatigue Syndrome. However this does worryingly have the implication that Prof Crawley may be consequently asking us to generalise an intervention tested on a group of children that contained those with ME/CFS and those the symptom of chronic fatigue in unknown proportion to all children with ME/CFS. This is analogous to confounding the symptom of headaches with the medical condition of a brain tumour, then evaluating a treatment on people with headaches, perhaps aspirin, then saying that aspirin can cure brain tumours.)
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large donner said:
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?
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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?
 
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