PACE trial data

Unsurprisingly from people who smugly argue "no evidence of reports of harm" when they explicitly made it impossible to do so, we now have "the data are available but you can't access it". So this is a gatekeeping platform and the data are not publicly available, the demands are obvious unreasonable and the authors appear to have a veto.

It's shocking to see this level of blatant dishonesty about medical issues. First they hide the data, fight their release, then lock it in a gatekeeping platform where they can still fight their release, later when we find the data have been "available" for 2 years without a notice, even though everyone involved in this is fully aware that people were demanding it, and they can still lock it tight to privileged eyes on obviously BS grounds.

All with public research data that has been used to coercively impose a hostile model of neglect to disastrous outcomes in health care. Literally completely wrong for all the wrong reasons. Wrong on the ends, even more wrong on the means.

And somehow we are what's wrong. Damn. No wonder entire continents can turn to fire and blood if even in the best circumstances trained professionals can be so petty and aggressive to the point where their self-interest is held far above millions of lives. Humans are a very fickle and unreasonable bunch.



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https://vivli.org/why-share-your-clinical-research-data/

• Funders are increasingly mandating data sharing. The Gates Foundation, Wellcome Trust and many others are
requiring that Individual Patient-Level Data from research they fund is shared. In addition, the updated NIH Data
Sharing Policy goes into effect 2023. For many funders, data sharing costs are an allowable research expense and may
be built into future grant proposals and billed to current grants.
• Top journals such as the NEJM, BMJ, Lancet and other ICMJE journals require that the data sharing statement is
made at the time of trial registration. Journals are publishing the data sharing statement at the time of publication.
• Moral obligations (owe it to trial participants). We owe it to participants of clinical trials who have volunteered to
take part in this research for their data to be leveraged to maximize scientific knowledge. Surveys show that most
participants want their data to be shared if adequate safeguards are in place.
• Increase citations. Sharing detailed clinical research data is associated with increased citation rate.


They forgot the tiny * to caveat that they meant all data except the very special very precious BPS data relating to chronic fatigue that pretends to be about ME/cfs.
 
rvallee said:
Unsurprisingly from people who smugly argue "no evidence of reports of harm" when they explicitly made it impossible to do so, we now have "the data are available but you can't access it". So this is a gatekeeping platform and the data are not publicly available, the demands are obvious unreasonable and the authors appear to have a veto.

It's shocking to see this level of blatant dishonesty about medical issues. First they hide the data, fight their release, then lock it in a gatekeeping platform where they can still fight their release, later when we find the data have been "available" for 2 years without a notice, even though everyone involved in this is fully aware that people were demanding it, and they can still lock it tight to privileged eyes on obviously BS grounds.

All with public research data that has been used to coercively impose a hostile model of neglect to disastrous outcomes in health care. Literally completely wrong for all the wrong reasons. Wrong on the ends, even more wrong on the means.

And somehow we are what's wrong. Damn. No wonder entire continents can turn to fire and blood if even in the best circumstances trained professionals can be so petty and aggressive to the point where their self-interest is held far above millions of lives. Humans are a very fickle and unreasonable bunch.
Click to expand...
But of course it is exactly the kind of behaviour that characterises these people, and their squalid approach to science. Every instance of it increasingly confirms their illegitimacy.
 
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