Discussion in 'PsychoSocial ME/CFS Research' started by Hutan, Jun 25, 2018.
This thread has been started as a place where reports from PACE trial participants can be recorded.
Thanks. This one from Lois Addy: http://copingbadly.blogspot.com/2018/03/reanalysis-of-pace-data.html
And another - left as a comment on Keith Laws blog:
This is concerning because the trial was well over by then - so what on earth were they doing still recruiting patients?
Link to the post with pdf of 19 public statements.
[Update: This is the link to the thread this previously came from]
[Another Update: Post from the other thread added below]
During the PACE trial itself a participant contacted me who was very concerned. Its been a long time so I do not recall details, and would not mention their username even if I recalled it, at least not without permission. They found their comments and complaints were not being recorded, the therapist was writing things like the patient is fine when what they were actually saying is they were having major problems.
To what end are we collecting these? Just for reference?
The thread was made to be a place to copy the participant reports posted in the twitter thread, so that they were more accessible and could be added to over time. So yes, just for reference and for a better understanding of what went on in the trial.
I could have copied posts, but we felt in this case that it was better that people decide what they want to be in the thread.
MS and PW have consistently said over the years that "no-one was harmed in the PACE trial", and that any harms resulting from GET (or CBT) outside the trial are because it isn't being done according to the trial protocol. It's clear that the authors have no intention of following up the participants. Survey data on harms seems to be disregarded. What else do we do?
Thanks for clarifying. As I've been asked to share this on the forum's Facebook page I just wanted to get confirmation in case anybody should ask the question on Facebook.
There is a danger that getting into a 'anecdote vs anecdote' debate ends up distracting from important problems with PACE, but at the same time, there is value in seeing what trial participants have to say about PACE.
I'm sure this doesn't need pointing out, but as with anything on the internet it's worth being a bit cautious about who said what. While it's possible for people to just make things up, there's also the problems of people misunderstanding, forgetting, etc. I spoke to one pwME who thought they'd been one of the people in the PACE trial, but actually it sounded like they were just attending a CFS clinic that had been a part of the PACE trial, and were getting treatment based on PACE manuals. For random patients unused to how trials work it's easy to get things mixed up.
That was my concern about soliciting stories, rather than finding historical accounts elsewhere online.
The only way of doing this properly is to interview all trial participants - which should have happened by way of 5 or 10-year follow-up - particularly once concerns had been raised.
[Note: I've just edited my first post to show the link where this thread originated from]
I could be going completely barmy today, so apologies in advance, but is there not a study/ initiative tracing PACE trial participants currently ? I have a faint memory of something mentioned last year.
Yes, but PW has retired, so no idea who is now doing it (if it is still being done). Also, why just a feasibility study? And 10 years for some participants passed 4 years ago... We're still waiting for the 5-year follow-up study to be published!
I remember a cryptic comment from last year re the FOI requests to the effect that Peter White was handling the same dataset for this study and therefore available to extract info. It may have been prior to his retirement - but if he is not doing it - who is?
thread on other place last year
Yes, and this needs to be done by someone independent of the PACE trial, with appropriate training. I cannot see this being allowed, at least not currently.
Well, quite [to eve.ry.thing]
It could be possible that I can use these testimonials in court. I'm collecting lots of stuff, you never know if it can be useful.
Yes, I wondered if that is what is going on in the post quoted above:
since there was never a CBT + APT arm of PACE. Unless she took up the offer to have CBT after the APT arm was finished or vice-versa.
Separate names with a comma.