PACE Trial and PACE Trial Protocol
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Graham
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I ticked "Like" on Sean's comment. Would that mean that we aren't serious?
Tom Kindlon
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Another substantial BMJ e-letter on the UK£5 million PACE Trial, this time from Alem Matthees.
He highlights various changes to the protocol.
He also highlights how the recovery criteria are much easier than planned (and there was an error in the justification given for changing them).
http://www.bmj.com/content/350/bmj.h227/rr-16
He highlights various changes to the protocol.
He also highlights how the recovery criteria are much easier than planned (and there was an error in the justification given for changing them).
http://www.bmj.com/content/350/bmj.h227/rr-16
I posted this last week in another thread. I thought I'd also post it here.
We have new 6-minute walking test data in the supplement. These are the scores at 24 weeks.
Here are the results at 52 weeks:
So doesn't look like one can conclude that they are gradually getting better after an initial slight improvement all around
They have data at baseline and 52 weeks for:
The 5% drop off (8 people) for GET makes me wonder whether people in GET were more likely to overpush themselves at 24 weeks and then have payback and so decide not to do the test at 52 weeks.
Knoop and Wiborg themselves speculated this might be happening:
We have new 6-minute walking test data in the supplement. These are the scores at 24 weeks.
Here are the results at 52 weeks:
So doesn't look like one can conclude that they are gradually getting better after an initial slight improvement all around
They have data at baseline and 52 weeks for:
The 5% drop off (8 people) for GET makes me wonder whether people in GET were more likely to overpush themselves at 24 weeks and then have payback and so decide not to do the test at 52 weeks.
Knoop and Wiborg themselves speculated this might be happening:
http://www.sciencemediacentre.org/e...reatments-for-chronic-fatigue-syndromeme-2-2/
A number of doctors, including Dr Miller, Action for ME's medical advisor, expressed their admiration and support for PACE here in 2011. Of most particular concern is paediatrician Dr Crawley's statment that she intends to do a PACE style study on children.
A number of doctors, including Dr Miller, Action for ME's medical advisor, expressed their admiration and support for PACE here in 2011. Of most particular concern is paediatrician Dr Crawley's statment that she intends to do a PACE style study on children.
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Bob
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Yes, it's worth reminding ourselves of the propaganda that the SMC promotes on behalf of their friends...
I've highlighted some of the more shocking untruths below...
Dr Alastair Miller said:
Dr Derick Wade said:
Dr Derick Wade said:
Prof Willie Hamilton said:
Dr Brian John Angus said:
More good responses to the PACE Trial piece in the BMJ posted today:
(i) "The cognitive-behavioural model of illness for chronic fatigue syndrome and myalgic encephalomyelitis is not supported by the outcomes of the PACE trial" - by Robert Courtney
(ii) "Rightly outraged" by Greg Crowhurst (Stonebird) (a carer) & Simon Lawrence (25% ME Group)
(iii) Re: Tackling fears about exercise is important for ME treatment, analysis indicates by Ian McIllroy (who lists various studies which found abnormal responses to exercise in ME and CFS)
http://www.bmj.com/content/350/bmj.h227/rapid-responses
(i) "The cognitive-behavioural model of illness for chronic fatigue syndrome and myalgic encephalomyelitis is not supported by the outcomes of the PACE trial" - by Robert Courtney
(ii) "Rightly outraged" by Greg Crowhurst (Stonebird) (a carer) & Simon Lawrence (25% ME Group)
(iii) Re: Tackling fears about exercise is important for ME treatment, analysis indicates by Ian McIllroy (who lists various studies which found abnormal responses to exercise in ME and CFS)
http://www.bmj.com/content/350/bmj.h227/rapid-responses
Ecoclimber
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Just wait a minute. I believe there are two salient points not emphasized enough in comments refuting the PACE Trial. First of all, within the biomedical field, all the data on which the researchers based their conclusions must be revealed within the four corners of their scientific research papers so other researchers can reproduce their findings. Secondly, before it is accepted as a matter of scientific fact, the evidence for the research must be replicated by other scientists with no competing interest. If the research cannot be replicated or if there is missing data for researchers, then the paper must be retracted. The most recent prominent example to date is the XMRV research paper in Science.
The fact that the authors of the PACE Trial refuse to release the data on which their research paper was based even under the FOIA, then summarily this research paper should be retracted. In addition, since results and conclusions stated in the PACE Trial have not been replicated by any other researcher outside of the UK, then the PACE Trial itself should not be considered as objective verifiable evidence until replicated. The same standard of scientific rigor and criteria required of research papers within the biomedical field must be applied within the behavior field. Otherwise, it is mere hypotheses, theories, and conjectures within a small contingency of powerful researchers of which many in the psychiatric profession fear to oppose.
We have an historical record where scientific technology has proven psychological theories obsolete and false. The most recent case is MS with the advancement of MRI technology. The results leave a vulnerable ME/CFS patient population suffering needlessly because of scientific turf wars among egotistical scientists. When you have a group of medical professionals blaming and vilifying the patient population for their illness instead of treating them, you wonder who really needs to have their heads examined.
The fact that the authors of the PACE Trial refuse to release the data on which their research paper was based even under the FOIA, then summarily this research paper should be retracted. In addition, since results and conclusions stated in the PACE Trial have not been replicated by any other researcher outside of the UK, then the PACE Trial itself should not be considered as objective verifiable evidence until replicated. The same standard of scientific rigor and criteria required of research papers within the biomedical field must be applied within the behavior field. Otherwise, it is mere hypotheses, theories, and conjectures within a small contingency of powerful researchers of which many in the psychiatric profession fear to oppose.
We have an historical record where scientific technology has proven psychological theories obsolete and false. The most recent case is MS with the advancement of MRI technology. The results leave a vulnerable ME/CFS patient population suffering needlessly because of scientific turf wars among egotistical scientists. When you have a group of medical professionals blaming and vilifying the patient population for their illness instead of treating them, you wonder who really needs to have their heads examined.
Graham
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There is a long, long history of the medical world failing to respect scientific methods. Think back to John Snow and his statistics proving that cholera was caused through fouled drinking water. The medics of the day ignored that and stuck to their belief in miasmas. The most recent example was with stomach ulcers, which the medical profession knew was caused by stress, knowing that bacteria could not survive in the stomach, until two Australians proved them wrong. We could fill the gap between them with all sorts of examples.
What really irritates me is that the two basic guesses of what lies behind ME, fear and deconditioning, have never been examined rigorously by other psychiatrists. In science, any hypothesis undergoes extensive debate, and is required to predict something that can be measured. There is enough evidence to debunk the deconditioning belief, but why hasn't there been any attempt to test the fear belief: surely a simple analysis of how people with ME respond to additional illnesses or conditions would make the point? When I broke my hip 5 years ago, if my life has been so restricted by fear it would have been evident in my recovery.
As you say, Ecoclimber, the XMRV claims were greeted with great suspicion and immediately efforts were made to replicate the results (as it should be in science), but with PACE we didn't even get an open debate.
What really irritates me is that the two basic guesses of what lies behind ME, fear and deconditioning, have never been examined rigorously by other psychiatrists. In science, any hypothesis undergoes extensive debate, and is required to predict something that can be measured. There is enough evidence to debunk the deconditioning belief, but why hasn't there been any attempt to test the fear belief: surely a simple analysis of how people with ME respond to additional illnesses or conditions would make the point? When I broke my hip 5 years ago, if my life has been so restricted by fear it would have been evident in my recovery.
As you say, Ecoclimber, the XMRV claims were greeted with great suspicion and immediately efforts were made to replicate the results (as it should be in science), but with PACE we didn't even get an open debate.
Daisymay
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Oh I hope she posts that as a BMJ rapid response for more people to see.
Bob
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This is a quote from the PACE CBT manual for therapists:
"The essence of CBT is helping the participant to change their interpretation of symptoms..."
I think that says it all really! Shame it doesn't improve outcomes.
"The essence of CBT is helping the participant to change their interpretation of symptoms..."
I think that says it all really! Shame it doesn't improve outcomes.
MeSci
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What does CBT stand for again...was it Complete Bl**dy Trash?
Tom Kindlon
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Simon
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Six minute walking test 'no longer a measure of physical function'
The PACE team have redefined the 6MWT, which was originally included as their chosen objective measure of physical function (a secondary outcome specificied in the protocol), as instead a measure of 'behaviour change' or exercise tolerance.
From the 2015 mediation paper: (you will need to register (free) to access fulll text and the appendix)
The PACE team have redefined the 6MWT, which was originally included as their chosen objective measure of physical function (a secondary outcome specificied in the protocol), as instead a measure of 'behaviour change' or exercise tolerance.
From the 2015 mediation paper: (you will need to register (free) to access fulll text and the appendix)
ie no longer even a secondary measure of physical function.
After they have the results they can try to disown results that were not good; that doesn't mean their interpretation should be accepted.
We saw with the cost effectiveness paper, they said they would look at valuing informal care in three different ways in the statistical plan: zero, minimum wage, average wage. Then in the paper itself, measuring it at zero wasn't mentioned. They only reported it using "average wage" and said the sensitivity analyses showed similar results, which was not what happened as the therapies were not cost effective at minimum wage (and so wouldn't have been if informal care was measured at zero). In discussion (i.e. following being challenged on this), they tried to disown the zero pricing method saying it was controversial. But they were the people who chose it.
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I wonder whether these e-letters have been highlighted before?
http://pb.rcpsych.org/content/early/2014/07/14/pb.bp.113.045005.abstract/reply#pbrcpsych_el_21069
http://pb.rcpsych.org/content/early/2014/07/14/pb.bp.113.045005.abstract/reply#pbrcpsych_el_21069