More PACE trial data released

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.

I think @JohnTheJack could make a strong case that QMUL’s response to his request has been vexatious.

 

Very good point!

 

from a recent article in the Guardian re 'recovery' in mental health, links to this article
Recovery Model of Mental Illness

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 can't remember who it was, but in relation to the 2 day CPET testing they said that the healthy controls complained but the patients would have crawled over tacks to prove that they had a physical illness.

 

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.

 

I am having trouble reading through this. What is the bottom line to the new data? I haven't seen any blogs on it.

 

It wasn't released in a form that allows it to be combined with the already publicly available data.

 

Good Luck with that!

 

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.

 

Hopefully they will grant your request in good faith!

 

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

 

Many thanks @JohnTheJack, and others who helped with this.

 

https://twitter.com/user/status/1152256116715413505

https://twitter.com/user/status/1152365686942924801

 

T'is more than irony. Downright hypocritical.