Having looked at the full trial protocol, and with reference to the TMG minutes, I can sort of understand why they ended up ditching actigraphy.
I don't think they really understood why they were measuring it (it certainly wasn't to help participants to pace or track activity). They didn't...
COI is a very, very grey area. When I worked at The Lancet, CoI was considered if you'd received any payment by Big Pharma. But I realised how problematic this is when I worked in research, because often drugs companies will pay for you to attend conferences, will pay for you to eat while at the...
Thanks Andy - that's how I found out what the page numbers were! If no-one else can help, that will be my next step - but I thought I'd ask here first.
I've tracked it down to the July 2004 issue of ME Essential - "MEA calls for PACE to be scrapped" (pages 3-4).
Does anyone have a copy? [ETA: Update - I now have a copy - see here]
It was mentioned in this extract from BJPsychBull in 2015:
There may also have been further discussion in the...
Thanks @Esther12 - I have all those - I was asking for the ME Association magazine article from 2004 that they referred to.
From TMG #10 - 15 Sept 2004
From TMG #12 - 12 Oct 2004
Does anyone have back issues of the ME Association magazine from 2004? I'm trying to find the article that mentions the PACE trial from that time. It's mentioned in the TSC/TMG minutes, with accusations of a "concerted campaign" against the trial.
@Carolyn Wilshire We're discussing the TSC and TMG meetings over on this thread, if you'd like to join us: https://www.s4me.info/threads/pace-trial-tsc-and-tmg-minutes-released.3150/
More truthful version (probably):
"Actigraphy is a measure of physical activity, measured by a wrist watch sized accelerometer, worn around the ankle continuously for a week. Before we started the trial, we were advised by the patient charity that the number and scope of the outcome measures...
They are doing things that they simply should not be doing. Here is that step test account from TMG #16:
The whole point of the step test is that it cannot be "paced". It is carried out using a metronome to make sure that it is NOT "carried out at a pace that suits the patient"!!! Aaargh...
The main thing I get from reading these minutes is how shockingly badly they understand the disease they're studying. They keep tripping over red flags - left, right and centre - and yet are so sure in their convictions that they just ignore them and carry on. It's quite baffling.
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