Haven't read it yet, but it's bound to be good:
http://blogs.plos.org/mindthebrain/...ity-needs-the-pace-trial-data-to-be-released/
http://blogs.plos.org/mindthebrain/...ity-needs-the-pace-trial-data-to-be-released/
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James Coyne's blog said:As seen in a PLOS One study, unwillingness to share data in response to formal requests is associated with weaker evidence (against the null hypothesis of no effect) and a higher prevalence of apparent errors in the reporting of statistical results. The unwillingness to share data was particularly clear when reporting errors had a bearing on statistical significance.
In his decision, the Commissioner found that QMUL failed to provide any plausible mechanism through which patients could be identified, even in the case of a “motivated intruder.” He was also not convinced that there is sufficient evidence to determine that releasing the data would result in the mass exodus of a significant number of the trial’s 640 participants nor that it would deter significant numbers of participants from volunteering to take part in future research.
You mean you aren't the Supreme Ruler of the Universe?Even if they're saying the same things as us, it's likely to have more impact than "Esther12, posting on the Phoenix Rising forum".
Say it isn't so!You're probably not even a real pink bear.![]()
Coyne new blog said:Despite authors’ claims to the contrary and their extraordinary efforts to encourage patients to report the intervention was helpful, there were simply no differences between groups at follow-up
Distorted the "debate"? What debate? These authors wanted to ensure there was none at all. And what is most scary is there pretty much was none, before patients raised issues.Coyne new blog said:interview of Richard Horton and PACE investigator Michael Sharpe in which former Lancet Editor Richard Horton condemned:
A fairly small, but highly organised, very vocal and very damaging group of individuals who have…hijacked this agenda and distorted the debate…
Coyne new blog said:In the past, PACE investigators have been quite dismissive of criticism, appearing to have assumed that being afflicted with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis precludes a critic being taken seriously, even when the criticism is otherwise valid. However, with publication of the long-term follow-up data in Lancet Psychiatry they are now contending with accomplished academics whose criticisms cannot be so easily brushed aside. Yes, the credibility of the investigators’ interpretations of their data are being challenged. And even if they do not believe they need to be responsive to patients, they need to be responsive to colleagues.
Would like that 100 times if I could, @elliepeabody!The spin, manipulation of data and attempts to demonise legitimate concerns by patients should be of interest to anyone who bases healthcare decisions on data from clinical trials.
A fairly small, but highly organised, very vocal and very damaging group of individuals who have…hijacked this agenda and distorted the debate…
We aren't even very vocal, unless talking amongst ourselves is a crime now. That said, they'd stop that if they could.Again with the mythical ME militants. I wish some journalist would ask these myth-spinners to point out these highly organized, very damaging people... not just one or two individuals... a group, as Horton claims........ OMG! Is he talking about us here at PR?Surely not. Vocal we may be, highly organized we are not. As for very damaging... I have yet to see any real damage... unless you count debunking CBT/GET, ME militancy, and other myths to fellow patients as damage.
They certainly seem to think it is.We aren't even very vocal, unless talking amongst ourselves is a crime now.
Projection, or what.I think there's a notable effort in the round here to attribute their own actions (stifling debate, being a powerful lobby, manipulating evidence, whipping up a media frenzy) to us. Which is possibly the result of a coordinated campaign. Remind me who was supposed to be doing that again?
Especially not compared to the highly organised and well funded, thoroughly legally researched appeal that Queen Mary Univ. made to try and prevent sharing of the data.Seriously though, "highly organized"? Us? I'm not sure we qualify as any kind of organized compared to other advocacy groups, or even general patient organizations.
Projection, or what.
Reminds me of that old, old semi-comedic shtick where some guy commits some crime, or does some nasty thing, and then with a wide eyes and a horrified expression points indignantly at some innocent schmuck and proclaims, "Grab him! He did it!"Especially not compared to the highly organised and well funded, thoroughly legally researched appeal that Queen Mary Univ. made to try and prevent sharing of the data.
Sigh, yeah. So much is still authority driven. We have said a lot of the same things, but over the years get ignored or denigrated. Its nice to have some open academic debate on this though. It gives us traction. Its also nice having a history trail on the net showing what we have said or done. I am guessing a journo or two might want to write a new book on this in time.Even if they're saying the same things as us, it's likely to have more impact than "Esther12, posting on the Phoenix Rising forum".
Yes, a total failure in scientific and medical community review.And what is most scary is there pretty much was none, before patients raised issues.