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

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80
I've thought about this a bit more. If I am not way off, the trial design actually makes even less sense than it would at first glance.

What is the purpose of introducing SMC at all instead of just comparing LP to control?
Even those that are regarded as specialists (Montoya et al) do vary greatly in their approaches. I doubt they actually got people that would remotely be regarded as experts for this study to deliver their 'SMC', so it is even less clear what exactly this term even means and literally all it does is induce a source of bias that is almost impossible to correct for. This is like that one study from a couple of decades ago where the question was whether chocolate consumption has any effect on the skin (with regards to pimples and so on) and all they did was to tell people not to eat chocolate, but did not look at what the subjects replaced their calories with - so it was conceivably other sweets. Their ridiculously over-extrapolated conclusion (that diet makes no difference to skin whatsoever) could be found in textbooks decades later.

I suppose their intention may have been to test LP under 'realistic' circumstances, but to do that one would have had to:
- Find some 'actual' ME patients (i.e. use stricter criteria, this will at the current point in time always be imperfect)
- Try to induce iatrogenic PTSD via several years of neglect and abuse to accurately reflect what is usually happening
- Split into the PTSD and the non-PTSD group (it does not work for everyone, some are more resilient), split those again into control and LP arms
- Compare outcomes

...and EVEN THEN you still would only have measured how much you got people to change their replies on questionnaires.
 
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15,786
The funding and ethics committees are just as liable for this as the BPS researchers.
Are they really clueless as to the "treatment" involved in LP, which is rather overt and heavy-handed brainwashing? If they knew that, how could they give funding or approval? If they didn't know that, how could they give funding or approval while not knowing what the treatment is?

Those groups behaved with an extreme lack of responsibility.
 
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15,786
I only scanned the paper but I think its worth looking at dropouts and imputting assumptions. School attendance figures not as good as subjective reports which suggests its reporting bias
I think the school attendance was a subjective report as well:
Participants were disabled by their fatigue: only seven were attending full-time school and 47 described themselves as attending 2 days or less school a week.
There's no explicit mention of it being an objective outcome, whereas I expect Crawley would have been crowing quacking it from the rooftops if it had been. It would be interesting to inquire by FOIA request if any objective attendance data was collected directly from the schools.
 
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Keela Too

Sally Burch
Messages
900
Location
N.Ireland
It would be interesting to inquire by FOIA request if any objective attendance data was collected directly from the schools.

They'll tell you they couldn't get that data, as it would breach some confidentiality between the school and the pupil.
To make it less of a subjective memory thing, they could have handed sheets to the parents to fill in regarding attendance each day. But that might give actual results instead of perceived changes. o_O
 
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15,786
What diagnostic criteria were used?
They cite to NICE, but don't give details for recruitment. Crawley always ignores the post-exertional fatigue/malaise requirement anyhow.

ME/CFS is generally described as:
Paediatric chronic fatigue syndrome (CFS) or myalgic encephalitis (ME) affects 0.57%–2.4%1–4of children and is disabling with important impacts on mood5 6 school attendance4 7 8 quality of life9 and family functioning.10 It is defined as generalised fatigue causing disruption of daily life, persisting after routine tests and investigations have failed to identify an obvious underlying cause.11 A minimum of 3 months of fatigue is required before the diagnosis can be made.12 On average, those affected miss a year of school overall and half are bedbound at some stage.13 14
 
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Messages
87
I wonder whether some of the missing data for school is that some of the patients may have left school at 16. I haven't looked very hard to find out whether the ages of the children are shown in the data. Also do the days treated as in school include where home tuition is arranged?
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
To be honest school attendance in itself is a very rough guide.

There's a big difference between being slumped at the back feeling awful and being actively engaged and learning.
What time of year did they check school attendance? Did they take account of things like whether it was just after exam time, or in the middle of the summer holidays the second time? Or whether it was the start of term the first time, before pupils had been ground down and started missing more? Or whether pupils who had moved up a year had more free periods and a more flexible timetable now that they were A-level students? Etc etc. Not that I don't trust Esther, of course.
 

Seven7

Seven
Messages
3,444
Location
USA
I would love a hacker would change every instance of ME Cfs and replace with some other desease like Lukemia, HIV whatever doesn't really matter. And see how the people and media react to the lack of respect. Sometimes you need to turn the mirror so people even see what they are saying.
 

user9876

Senior Member
Messages
4,556
I think the school attendance was a subjective report as well:

There's no explicit mention of it being an objective outcome, whereas I expect Crawley would have been crowing quacking it from the rooftops if it had been. It would be interesting to inquire by FOIA request if any objective attendance data was collected directly from the schools.


From their stats plan
http://www.bristol.ac.uk/media-library/sites/ccah/migrated/documents/statisicalanalysespdf.pdf

2.10.2. Secondary outcomes School attendance in the previous week, collected as a percentage (10, 20, 40, 60, 80 and 100 %), at 3 months, 6 months and 12 months ; the SF-36 (physical function) at 3 and 12 months; Chalder Fatigue Scale score at 3, 6 and 12 months and pain visual analogue scale at 6 months. We have obtained consent to check school attendance using school records at assessment, 3, 6 and 12 months.

Which suggests they should have no missing data for school attendance unless they have withdrawals.
 
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