Discussion in 'PsychoSocial ME/CFS News' started by JohnTheJack, Mar 23, 2018.
More evidence that the SMC group wasn't a control group (from TMG #15):
According to the TMG minutes, the PACE trial sessions were to be blind reviewed by nurses from the FINE trial, whose views regarding ME/CFS patients were recorded during FINE as being very hostile at times:
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.
I don't, but I know these TSC minutes were previously released, so it could have been referring to these? [two sets of minutes posted in three posts]:
(This set of minutes needed to be split over two posts itself - part 1)
Part 2 of the above minutes.
There was this on the "MEA campaign to stop PACE and FINE":
In the above there was also this bit referring to "the TMGs struggle to ﬁnd an objective outcome measure as requested by the TSC at their last meeting". It would be good to find the details of the discussions referred to, but I expect that the minutes don't include them.
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
Ugh - I misread your post. I've done that a few times recently.
I had anyway been thinking about drawing attention to those earlier releases, and seeing if they included info censroed from the new release.
I've been searching through my emails from 2004 (this one 5th June) and was sent one from a member of the MEA. Still trying to find the statement which it refers to
""Our attention has been drawn to a public statement by the ME Association regarding the PACE trial, of which we are the principle investigators.
We regret that no-one from the MEA contacted us to discuss these matters before publication. We would be willing to discuss your questions and concerns about the trial in person.
If you would like to do this, please contact Dr. White, in the first instance.
Dr. Peter White
pp Professor Michael Sharpe
pp Professor Trudie Chalder."
Plus the MEA seem to have been busy that year
(extract from another email)
In July we met with Peter White, Michael Sharpe, Trudie Chalder et al
to explain our objections in considerable detail. We have not had
any change of mind since that meeting.
A few weeks ago we explained our objections to the Medical Research
Last week I went up to the Department of Health to explain why the
MEA remains opposed to the PACE and FINE trials.
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 October 2004 issue.
Not sure if this is currently accurate but this page on the MEA website states that they can provide copies of past articles.
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.
Can @Russell Fleming advise?
Haven't read that paper in a while. It's awful in many ways, but a few things stood out:
Despite what they say when dismissing the actigraphy, they clearly set out to improve 'fatigue and disability'.
The analysis 'also addressed the potential clustering effects resulting from different numbers of patients being treated by the different therapists'.
'These very high rates of follow-up were achieved as a result of the commitment of the participants and the assiduous work by the research staff. The strategies used by the latter included offering convenient interview times (including early evenings), mailing most questionnaires to allow sufficient time to answer them before interviews, paying travel expenses, following up non-attenders expeditiously by mail and telephone, offering to see the participants at their homes and, as a last resort, recording the primary outcomes over the telephone.'
They visited patients' homes?
No wonder there was a placebo effect: travel expenses, birthday cards, home visits...
They decided 'to have the most appropriate discipline deliver each therapy' which 'ensured optimal delivery of each therapy by the therapists most likely to deliver these therapies in clinical practice', but then 'occasionally, it was necessary to train an existing therapist in a second therapy, which proved popular with those who did it'.
They also push heavily their 'CFS treatment centres' and it was presumably there they were 'providing guaranteed employment beyond the trial, when possible'.
I am surprised that they did not go on strike for violation of restrictive practices.
But this is interesting. I have it down in my notebook that maybe the colour of the cardigan does not matter? An important scientific finding.
It is a curious paper and presumably invited by someone? You do not normally publish a paper and then publish how you came to do the study a second time - unless of course you are testing Einstein's theory of general relativity or something. Some useful historical bits.
Yes, it reads oddly and confused, part rehash of protocol, part narrative, part justification.
It reeks again of hubris.
According to the TSC minutes, the thinking was,
20050629 TSC 29/06/05
Separate names with a comma.