Livestream Tuller and Hughes 2 Oct 2018 Newry : The PACE Trial: 'One Of The Greatest Scandals

Binkie4 said:
@rvallee
That newsletter could be dynamite. Is there any way you could help us identify who/ where/ when it was sent?

The veracity needs to be solid.
Unless absolutely true, and able to be shown to true, using it could rebound on the community and confirm the negative perceptions of us.

Does anyone else have access to any mid research newsletter?
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These newsletters have been known about for a long time and have been written about, by David Tuller, for example, and Wilshire and colleagues. They were written by the PACE team and sent to patients in the study. It's no secret.
 
Binkie4 said:
Unbelievable that this should have been sent out. Truly stunned. Was the comment from Downing Street authorised. Who by?

I haven’t tried to look up the link at the bottom. Anyone know if this sort of accolade is usual?
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To be clear, it was posted. I have no idea if it was sent out. Some commenters have written that it was sent out, but that would be inaccurate. Is this usual? No, it is all disgraceful. Maybe a newsletter is ok. But testimonials, articles about how NICE has approved CBT and GET, and a message from 10 Downing St are all excellent ways to bias the findings. These things render any findings they claim invalid.
 




Newsletter 3:

"Although the PACE trial outcome has not been incorporated into the guidelines, as it is still in progress, the good news is that the guidelines are reviewed two and four years after publication and we hope that the trial outcome will enrich the guidelines in 2009."
 
[Apologies, don't want to interrupt the discussion]

Grigor said:
Is anyone able to make a transcript or a summary would be amazing! #severeME
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Matt (@DondochakkaB) said:
Pro-tip: You can actually sort of crowd-source a transcript if a Video is on Youtube. I don't know if they have a similar feature on Facebook.
That way, even if you only transcribe one sentence of the whole talk, it can contribute to the finished transcription which can be downloaded once complete.
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When I understood @Luther Blissett properly, youtube will automatically generate subtitles when a video is put on accordingly.

Youtube's features also will extract the subtitles to a transcript. Afterwards, you just have to copy the transcript into a text document.

https://www.s4me.info/threads/2-day...pers-your-experience-discuss.1491/#post-24976

There is still work needed to correct youtube's spelling mistakes, and when I once tried this with another video, I was only able to do this partially and gave up finally. But since I was not able to listen to the complete video I found the youtube transcript helpful for a start.

Also, when adding proper subtitles, it might be easier to have the automatically generated transcript as a basis.

I don't know how to put a video on youtube, though.

[Apologies again -- wrote this brainfogged; edited for clarity]
 
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dave30th said:
To be clear, it was posted. I have no idea if it was sent out. Some commenters have written that it was sent out, but that would be inaccurate. Is this usual? No, it is all disgraceful. Maybe a newsletter is ok. But testimonials, articles about how NICE has approved CBT and GET, and a message from 10 Downing St are all excellent ways to bias the findings. These things render any findings they claim invalid.
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Thanks @Dave 30th.
I understand absolutely that the Pace trial findings are completely invalid.
The intricacies of this are fascinating. Downing Street- I never thought it went as far as that. Totally shocking. Just don’t know what it means. Who authorised it?
Could I ask you to clarify my understanding that while the above newsletter was posted on line, are you saying that we are not sure that it was circulated to the Pace participants? I will be seeing my MP and want to know whether I can use it.
All good wishes for Sheffield. It is great that you are spreading the word.
 
It is interesting to try to envisage the process which must have occurred to obtain the endorsement from Downing Street. It can hardly be like applying for the telegram from the Queen. Has any other research programme ever been known publish an endorsement of that nature?

Has this been cooked up by the SMC and the No 10 press office, or is it the internal machinations of the DWP and DoH?

ETA whoever did arrange this would have to have been pretty dim not to see the potential problems.
 
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chrisb said:
It is interesting to try to envisage the process which must have occurred to obtain the endorsement from Downing Street. It can hardly be like applying for the telegram from the Queen. Has any other research programme ever been known publish an endorsement of that nature?

Has this been cooked up by the SMC and the No 10 press office, or is it the internal machinations of the DWP and DoH?
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I suspect that when you rub the veneer of respectability you will quickly reveal the chipboard of sleaze and misinformation
 
Further thoughts on the No 10 intervention.

It looks as though it might have been intended as a fairly non-committal response to a question about PACE. Stripped of the question, and possibly with other parts of the response edited out, and presented alongside the various puffs for the trial, it is made to appear as though No 10 has an interest in the matter.

The question which would then arise would be whether a question was planted simply to elicit such a response, to be used for these purposes, or was it a reply to a genuine question being used out of context.

It may therefore be that this does not show any political intervention, but does show the intention of the trial committee to prejudice the views of participants by over-emphasising the interest in, and importance of, the outcome. In any event, it shows poor judgment.
 
Trish said:
I first read about the newsletters sent to participants from Malcolm Hooper's Magical Medicine. I've just had a look - it's on page 251. He quotes parts of the third newsletter which is the same one as posted on this thread. He is clear that they were sent to participants.
http://www.investinme.org/Documents/Library/magical-medicine.pdf
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Thanks @Trish.
I jumped to page 251 and found the detail about the newsletters. Issue 3 ( Dec 2008) which is the one posted earlier in the thread was quoted. There were quotes from a doctor and 6 participants which match our copy but no reference to the 10 Downing Street comment. Odd??
 
Binkie4 said:
Could I ask you to clarify my understanding that while the above newsletter was posted on line, are you saying that we are not sure that it was circulated to the Pace participants? I will be seeing my MP and want to know whether I can use it.
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It's a participants newsletter so presumably participants saw it--they were the audience. They published four newsletters. This was #3. The others did not include this kind of stuff. This page, p. 3, contained six testimonials, a testimonial from a doctor, and the congrats from 10 Downing St. I have no idea who at 10 Downing authorized it. I have no idea if it was actually sent out directly as in an e-mail to all participants, or if it was just posted on the trial website. But whether it was sent directly or just posted is immaterial. It was "disseminated" just by being posted. They put out this information for participants, whether it was sent out or just posted. And the same newsletter has an article about the PACE guidance, which was published the year before, and tells participants that CBT and GET have been approved by NICE "based on the best available evidence." None of this is allowed in clinical trials. It is bizarre they thought this was fine.

I'm not sure what you mean about being able to use it when you see your MP. You mean show it to him? Why would there be a problem with that?
 
Trish said:
He is clear that they were sent to participants.
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He might have information that it was actually sent to participants. It very well might have been. I haven't said it wasn't. I've said I don't know--no one has provided me with evidence. But it doesn't matter an iota whether it was sent or just posted on the trial website. Whichever it was, they disseminated testimonials about the trial that they had no business disseminating.
 
chrisb said:
It may therefore be that this does not show any political intervention, but does show the intention of the trial committee to prejudice the views of participants by over-emphasising the interest in, and importance of, the outcome. In any event, it shows poor judgment.
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I would definitely not assume there was political intervention. I assume they just solicited the praise from 10 Downing St. and that whatever stupid PR person in the PM's office approved it likely had no real idea that this was totally a wrong thing to do. I would lay the blame fully upon the PACE team and no one else, except their oversight committees and their research ethics committee.
 
@dave30th
Thanks for your reply. Yes that newsletter #3 is bizarre and inappropriate. I had not seen it before but looked it up today. Quite honestly I was shocked when I read Downing Street. Could not quite believe it ....but I suppose nothing is unbelievable with this lot. The research methods are unbelievable, Wessely and the Maddox Prize is unbelievable etc.......Thanks for bringing the information into the light.
 
dave30th said:
I would definitely not assume there was political intervention. I assume they just solicited the praise from 10 Downing St. and that whatever stupid PR person in the PM's office approved it likely had no real idea that this was totally a wrong thing to do. I would lay the blame fully upon the PACE team and no one else, except their oversight committees and their research ethics committee.
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I agree. In fact the moment is pretty weird because it is nonsense. How can a trial allow patients to:

'decide for themselves what treatment is likely to be best from (sic) them' ?

The patients did not do any deciding what was best - the PACE authors kept that job to themselves.
Patients did not have more than one treatment so how could they find out which was best of them?

This looks like an invented quote by some PR idiot written for the prime minister to sign up to. Interesting that it was Tony Blair. I doubt Cameron would have been this sloppy. Blair was much more of a crony cultivator.
 
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