Reports from participants in GET and CBT trials

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:

Julie (2 November 2015)
I was on the PACE trial. I was part of the late intake of participants and was in the CBT + APT arm of the trial. I've seen references in other places stating participants only received CBT with GET. This is not true and is an important point.

I walked into the trial with a stick and moderate M.E. still managing to work part time. My course was 6 weeks long, 2hrs a week. I came top of my group for CBT and was told this is how you are treated with ME that by changing your attitude and responses to things you will improve. So I complied.

19th December 2011, 3 days after the end of the course I collapsed from the effort of getting to it. I've been 80% housebound and periodically bedbound in relapses ever since. I cannot comply with anything now.

from http://keithsneuroblog.blogspot.com/2015/11/pace-thoughts-about-holes.html
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This is concerning because the trial was well over by then - so what on earth were they doing still recruiting patients?

Sarah said:
I've uploaded it directly.
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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]

Sarah said:
A cursory Googling only turns up Alem's main response and this blog post by Clark Ellis which links the Google page @Adam pwme posted:

https://autodidactauthor.wordpress.com/2016/08/29/pace-and-the-interests-of-trial-participants/

"One document submitted by Alem Matthees as part of the evidence to the tribunal was a document collating the publicly available comments from PACE trial participants who had voluntarily come forward to express their views in public. A copy can be found here. It was submitted to dispute the claims of QMUL that patient participants were in danger of being harassed, and shows that in all cases where patient participants have come forward they have not been harassed, but rather have been praised, thanked and supported. This is no surprise, as we are all patients and we all just want to get better."
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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.
 
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.
 
Andy said:
To what end are we collecting these? Just for reference?
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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?
 
Lucibee said:
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?
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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.
 
Shared.
Were you a participant in the PACE trial and harmed by the treatment that you were given?

Authors of the PACE trial have consistently claimed that no-one was harmed by taking part in the trial.

Due to the typical ME patient experience, where going beyond our exertion limit will result in a crash, potentially a temporary relapse or, at worst, a permanent reduction in our level of functioning, generally patients find this hard to believe.

If you were a PACE trial participant and suffered harm, one of our forum members has created a discussion thread and is keen to hear your story. If you'd prefer not to create a free forum account in order to add your information, leave it in the comments below this post, or if you'd prefer to remain as anonymous as possible, message this page.
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Code: 
https://www.facebook.com/sci4me/posts/599272020459211
 
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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.
 
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Esther12 said:
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.
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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.
 
Lucibee said:
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.
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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.
 
Amw66 said:
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.
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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!
 
Lucibee said:
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!
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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?
 
Esther12 said:
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.
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Yes, I wondered if that is what is going on in the post quoted above:
Julie quoted by Lucibee said:
I was on the PACE trial. I was part of the late intake of participants and was in the CBT + APT arm of the trial.
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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.
 
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