More PACE trial data released

Adrian said:
Especially since they dropped accelorometers due to the load on patients.
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You mean, they claim to have dropped accelerometers due to the load on patients. The evidence from TMG minutes suggests that they actually dropped actigraphy because a Dutch trial had shown it was “not useful” – i.e unlikely to produce the desired positive result. (Newcomers, see @Lucibee ’s blog: Whatever Happened to Actigraphy; https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/)

But I completely agree with your point. For most of the 27 years that I’ve been unwell there is no way that I could have filled in all the questionnaires and provided all the required feedback. But even at my most severe I would have been happy to wear an accelerometer for as long as necessary. The burden excuse strikes me as a blatant lie.

Esther12 said:
I guess there's also a danger that a repeated similar request could be viewed as 'vexatious'?
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I think @JohnTheJack could make a strong case that QMUL’s response to his request has been vexatious.
 
The 'too much of a burden to patients' excuse was obvious nonsense when they first used it, and the TMG notes obtained later prove it was also a lie and, IMHO, scientific fraud (by removing a measure that they knew was likely to provide strong disproof of their hypothesis).
 
Sly Saint said:
The use of the word 'recovery' for psychotherapies (see stuff on IAPT) seems to be quite different from how most people would understand it.
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from a recent article in the Guardian re 'recovery' in mental health, links to this article
Recovery Model of Mental Illness
the concept of recovery is about staying in control of their life rather than the elusive state of return to premorbid level of functioning. Such an approach, which does not focus on full symptom resolution but emphasises resilience and control over problems and life, has been called the recovery model
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The recovery process provides a holistic view of people with mental illness that focuses on the person, not just their symptoms.[4,5,6] The process argues that such recovery is possible and that it is a journey rather than a destination. It does not necessarily imply a return to premorbid level of functioning and asymptomatic phase of the person's life
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418239/

this appears to be the version of 'recovery' that is being applied to ME/CFS
 
I think @JohnTheJack could make a strong case that QMUL’s response to his request has been vexatious.[/QUOTE]

I find it inconceivable that the raw data was stored in a database or spreadsheet without each participant's data aligned or identified by a code number (like Jack did). As the new data is not aligned it can only have got that way by somebody deliberately jumbling it up or withholding the sorting code. 'Vexatious' is the mildest word that comes to my mind.
 
Barry said:
Also good luck. Hopefully their notion of "in good faith" accepts the fact it was a bit crass providing a second tranche of the same data set that had no means of aligning with the first they had previously made available.
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Thanks. I am slightly hopeful in that I think if they weren't even going to try, they would have said so immediately. But who knows?
 
Barry said:
Good grief! Not seen that before. I wonder where they found the 'evidence' for that. (In case not obvious, that was sarcasm on my part). They just dream up these fancy-sounding but completely spurious justifications for their equally spurious claims of treatment successes. It is they who seem to have the grandiosely exaggerated perceptions.
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Exaggerated expectation of recovery?
More nonsense suggesting incorrect beliefs or perceptions.

Perhaps Mark Vink fabricated his past marathon times?

Perhaps I fabricated my memory of being able to sit upright for a full day without pain?

Do I think it's possible to not recognize when I'm well? Not likely!!!
Frankly I would be delighted to function at the average level of a pensioner. I think I would probably overestimate any improvements
 
I have now received a new data file.

I requested that the data be aligned with previously released data. QMUL say that they are providing me with the information as requested. I cannot verify that to be the case. I believe, however, that these data are aligned with the individual results in the data released after Alem Matthees's successful tribunal hearing.

https://www.dropbox.com/s/ur8h533uio0x9ej/PACE_July2019.xlsx?dl=0
 
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