To get back to the main thrust of this post - Crawley and the apparent misuse the REC number - I have a bit more from my 'contact' to add to this story:
One of the published studies that used the REC reference number was by Esther Crawley
and Peter White -
https://academic.oup.com/qjmed/article-lookup/doi/10.1093/qjmed/hct061 - adults this time, not children. So how can that REC number possibly fit? And yes, a complaint was made to the journal – QJM- about this paper too….and the journal’s response (after 3+ months to investigate) - “no corrections to this article are required at this time”. No more, just that. They gave no explanations regarding this REC number and didn’t address the concerns raised in the complaint about the apparent lack of informed consent of at least some patients who would have contributed to the National Outcomes Database. Badly done, I’d say.
This is an extract of the email sent in reply to the Editor of QJM:
“I am both surprised and disappointed that, following your long and 'substantive' investigation, you have not provided any explanations or evidence to me to allay my concerns over the matters that I raised about the above paper.
It is astonishing that you have failed to offer me any explanation regarding the apparent misuse of the REC number.
To use common parlance - as it stands, this stinks.”
NB We are being offered this information on a plate by someone (who doesn’t have ME and who doesn’t want the limelight) who has gone to great lengths to help our cause for no personal gain. I think it’s a pity that PR members don't seem to be taking more of an interest in this. I think we have a lot to lose by ignoring contributions from less prominent sources.