Corrected proof: Treatment outcome in adults with CFS: a prospective study in England, CFS/ME National Outcomes Database, 2013, 2020, Crawley,White

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database

E Crawley, S M Collin, P D White, K Rimes, J A C Sterne, M T May CFS/ME National Outcomes Database

(originally published 2013)

This is a correction to:
QJM: An International Journal of Medicine, Volume 106, Issue 6, June 2013, Pages 555–565, https://doi.org/10.1093/qjmed/hct061
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The ‘Ethical Approval’ section of this paper has been updated to read -

The data used in this study was originally collected and collated in the National Outcomes Database for the purposes of evaluation of CFS/ME services. The collection of a subset of CFS/ME patient data as part of the .national CFS/ME collaborative was confirmed to be service evaluation by the North Somerset & Bristol Research Ethics Committee under REC reference 07/Q2006/48, and in a letter dated 29 January 2007 the Chair of the Research Ethics Committee had previously confirmed (a) that it would not be necessary to apply for ethical permission to use the data being collected as part of service evaluation for the national CFS/ME collaborative and (b) that if in future this data were to be used as part of a research project, this would be agreeable.
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https://academic.oup.com/qjmed/article/doi/10.1093/qjmed/hcaa090/5828335
 
We used data from six CFS/ME (myalgic encephalomyelitis) specialist services to measure changes in fatigue (Chalder Fatigue Scale), physical function (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and pain (visual analogue pain rating scale) between clinical assessment and 8–20 months of follow-up. We used multivariable linear regression to investigate baseline factors associated with outcomes at follow-up.
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But. We know for a fact that those services don't do any such monitoring of outcomes, they consider every patient as a personal journey of discovery, or whatever. And the outcomes cited above are only minimally relevant, certainly not to outcomes. We also know there is no consistency between the services, everything is basically ad hoc, the clinics make their own choices and even "personalize", whatever that means, everything for every patient. There literally cannot be any reliable data given that.

So did the services lie in response to FOI requests when asked to provide them for the paper that evaluated their service evaluation? Did they keep this data secret and lie about not having them? Where does this data otherwise come from? And who lied and for what purpose?

This late correction is really bizarre. Looks like some legal CYA.
 
rvallee said:
But. We know for a fact that those services don't do any such monitoring of outcomes, they consider every patient as a personal journey of discovery, or whatever. And the outcomes cited above are only minimally relevant, certainly not to outcomes. We also know there is no consistency between the services, everything is basically ad hoc, the clinics make their own choices and even "personalize", whatever that means, everything for every patient. There literally cannot be any reliable data given that.

So did the services lie in response to FOI requests when asked to provide them for the paper that evaluated their service evaluation? Did they keep this data secret and lie about not having them? Where does this data otherwise come from? And who lied and for what purpose?

This late correction is really bizarre. Looks like some legal CYA.
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It was one of the numerous papers where Crawley 'reused' the same REC number (07/Q2006/48)

see:
https://www.s4me.info/threads/david...how-to-avoid-ethical-review.6653/#post-121341
 
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