re The PACE trials

First watch these videos.

The PACE trials

http://www.youtube.com/watch?v=Sa3LyYxu49s

http://www.youtube.com/watch?v=PJf27ExfyMA

http://www.youtube.com/watch?v=qXMZv0MzFCo

http://www.youtube.com/watch?v=b3_mjQe-t1M

Then read about this report – be sure to read the initial reaction from the MEA.

Recovery from chronic fatigue syndrome after treatments given in the PACE trial
P. D. White1*, K. Goldsmith2, A. L. Johnson3,4, T. Chalder5 and M. Sharpe6 ; PACE Trial Management Group#
pdf format: http://journals.cambridge.org/images/fileUpload/documents/White_PSM_Paper_Jan13.pdf

MEA initial reaction to latest PACE Trial results on recovery | 31 January 2013

by Tony Britton on January 31, 2013

Initial reaction from Dr Charles Shepherd, Medical Adviser, The ME Association:

It is really quite bizarre to find that there is absolutely no data whatsoever in this paper on what most people would regard as three objective markers of recovery:

1 a return (or ability to return) to full time meaningful employment or education

2 no longer claiming any DWP sickness or disability benefits

3 an estimation of how far someone can walk

Just as surprising is the absence of any discussion on the use of benefits as a marker of recovery along with the very unsatisfactory reasoning given in the paper (on page 6) for not using employment status or an objective measure of activity levels:

The main limitation of this analysis is the absence of a generally agreed measure of recovery. We addressed this by using multiple domains of health and disability. The domains chosen and the criteria for recovery on each were defined before we undertook the analysis. Alternative domains could have been used, such as return to work or objective measures of physical activity. Return to work is not, however, an appropriate measure of recovery if the participant was not working before their illness and is influenced by other factors such as the job market. Objective measures of physical activity have been found previously to correlate poorly with self-reported outcomes (Wiborg et al. 2010), which may be related to the finding that activity patterns in CFS patients are heterogeneous, with only a minority being pervasively passive (van der Werf et al 2001).

http://www.meassociation.org.uk/?p=14333

 

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1 Response to “re The PACE trials”


  1. 1 Hip February 19, 2013 at 8:20 am

    These Researchers use Misleading Word Definitions

    In this PACE trial study, the researchers (White, Sharpe, et al) use dishonest and misleading wording.

    These researchers wrote in the summary section (abstract) of their paper that: “this study confirms that recovery from CFS is possible, and that CBT and GET are the therapies most likely to lead to recovery .”

    However, this statement is very misleading, because the authors are not using the normal dictionary meaning of the word “recovery” (namely “a return to a normal state of health, mind, or strength “), but are rather employing their own special redefinition for this word.

    Yet no indication is given in this summary that the redefined term “recovery” does not have its normal English meaning.

    Thus busy individuals such as general practitioner doctors, who may merely scan the summary of a study without always delving into its methodological complexities, will get the impression that GET and CBT are able to return CFS patients to a normal state of health, mind, and strength, which is not the case at all.

    A study which redefines the meanings of the words it uses must make sure that precise definitions of the redefined terms are clearly given, so that there can be no misinterpretations.

    The authors of this study are thus being less than honest.


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