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New poor Guardian article "ME and the perils of internet activism" 28th July 2019
- Thread starter Esther12
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MSEsperanza
Senior Member (Voting Rights)
Apologies for just popping in.
Most probably already said by others -- about how the accuser repsonds to sientists' criticism on social media:
Edited to add:
Or to more widely acknowledged campaigners:
Most probably already said by others -- about how the accuser repsonds to sientists' criticism on social media:
Edited to add:
Or to more widely acknowledged campaigners:
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rvallee
Senior Member (Voting Rights)
Nice.
Weird how Sharpe only says "you're wrong" and adds nothing more. We do live with this illness in the dark. No denying that. Yet he does.
"ME patients are fighting against injustice". "No they're not", says the amoral fraud whose career was built on this injustice. Sure.
MSEsperanza
Senior Member (Voting Rights)
I realize it's the Observer and not the Guardian, but as they seem to be a joint publication, the editors in charge might want make themselves aware of the corrigendum Guardian's Ian Sample added to a podcast on the same topic:
"in the podcast we talk about a paper on CFS interventions that appeared in the prestigious Cochrane database of systematic reviews. It was later temporarily removed after a complaint from the public. This was our starting point when looking at the role of public pressure when it comes to science and when we made the podcast we didn't know the exact nature of the complaints or who had made them."
"Since our show, the details of the complaint have been made public and they show that it was based in science."
https://www.theguardian.com/science...public-play-in-science-science-weekly-podcast
Transcript see: https://www.s4me.info/threads/the-g...blic-play-in-science.6474/page-10#post-190216
(Thank you @Tom Kindlon for posting the notification and the transcript!)
"in the podcast we talk about a paper on CFS interventions that appeared in the prestigious Cochrane database of systematic reviews. It was later temporarily removed after a complaint from the public. This was our starting point when looking at the role of public pressure when it comes to science and when we made the podcast we didn't know the exact nature of the complaints or who had made them."
"Since our show, the details of the complaint have been made public and they show that it was based in science."
https://www.theguardian.com/science...public-play-in-science-science-weekly-podcast
Transcript see: https://www.s4me.info/threads/the-g...blic-play-in-science.6474/page-10#post-190216
(Thank you @Tom Kindlon for posting the notification and the transcript!)
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Such quality investigative journalism. ( sarcasm)
Lucibee
Senior Member (Voting Rights)
I can't find where this is stated. Has it been amended?
eta: Ah OK found it - it was amended in the podcast itself. But that is NOT clear. They should really provide a transcript of that section on the web page itself.
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It's at about 1:50 as part of the new preface to the podcast.
Sly Saint
Senior Member (Voting Rights)
I think it is an additional bit of podcast; transcript here
https://www.s4me.info/threads/the-g...blic-play-in-science.6474/page-10#post-190216
eta:cross posted with SallyC
Caroline Struthers
Senior Member (Voting Rights)
But the previous guy (David Tovey) backtracked on his decision already! I have met with the new editor (Karla Soares Weiser) and she implied she was about to publish an amended version of the 2017 review. So I don't know what Sharpe means about backtracking. Perhaps he means (God forbid) she will backtrack on the decision not to publish the new review of GET which uses individual patient data of which he is an author.
Hoopoe
Senior Member (Voting Rights)
Thanks. Do you know if Soares-Weiser believes the scare stories about patient activists?
Ok I got confused about the timeline
Caroline Struthers
Senior Member (Voting Rights)
I don't know. When we met her last month she used her newness in the job to ask for yet more time to consider what to do about the review. But she is not really new as she had been deputy Editor in Chief for at least six years working closely with David Tovey.
Lucibee
Senior Member (Voting Rights)
Oh this is getting super confusing. The IPD review *was* withdrawn: https://www.cochrane.org/CD011040/D...onic-fatigue-syndrome-individual-patient-data
Is there really an indication that they might reverse this decision?
The whole Reuters story arose from the complaint about the other GET review - although has Sharpe deliberately muddied things for the sake of a story?
Jonathan Edwards
Senior Member (Voting Rights)
The IPD review proposal was 'withdrawn', the proposed review having failed at peer review but there was no publication to withdraw, as I understand it.
rvallee
Senior Member (Voting Rights)
Sharpe is simply trying to influence the process. We saw the initial chilling effect when Wessely and Gerada abused their influence to intimidate backing out of the temporary retraction, promising war with Cochrane if they went ahead and put patients' interests against of theirs.
Bullying works when it comes from people in a position of authority. The former heads of the royal college of psychiatry and royal college of GPs are very influential in this regard and they are politically connected even beyond those roles. It's blatant but then the very same people succeeded in bullying us out of any public sympathy as well.
Question is how Cochrane feel about being bullied. I'm sure Wessely and Gerada can and will make them suffer but it still feels very dirty being used this way. Hopefully it leads to some people understanding that this is what was done to us, Hilda Bastian certainly made that case very aptly.
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Lucibee
Senior Member (Voting Rights)
It looks like they've tied themselves in all sorts of knots over this: https://www.cochranelibrary.com/cds....pub2/detailed-comment/en?messageId=202396298
https://www.cochranelibrary.com/cds....pub2/detailed-comment/en?messageId=202396298
How can they say, "The authors of the Cochrane review have, however, not been involved in the correspondence between QMUL and ICO, and we have no knowledge of what QMUL has referred to in their response" and "your comment contains certain statements relating to the FOI request submitted to QMUL, and their responses on the current availability of raw data from the PACE trial. The Cochrane reviewers have no knowledge of these matters, and can neither confirm nor reject the statements made in your comment" and then still say "We can confirm that the Cochrane reviewers will have access to sufficient PACE trial data to perform the review in accordance with the Cochrane protocol", when three of the PACE trial authors, at least two of whom very much do have knowledge of those matters, are also potential authors of the IPD review?
@Caroline Struthers - when was the comment submitted?
https://www.cochranelibrary.com/cds....pub2/detailed-comment/en?messageId=202396298
How can they say, "The authors of the Cochrane review have, however, not been involved in the correspondence between QMUL and ICO, and we have no knowledge of what QMUL has referred to in their response" and "your comment contains certain statements relating to the FOI request submitted to QMUL, and their responses on the current availability of raw data from the PACE trial. The Cochrane reviewers have no knowledge of these matters, and can neither confirm nor reject the statements made in your comment" and then still say "We can confirm that the Cochrane reviewers will have access to sufficient PACE trial data to perform the review in accordance with the Cochrane protocol", when three of the PACE trial authors, at least two of whom very much do have knowledge of those matters, are also potential authors of the IPD review?
@Caroline Struthers - when was the comment submitted?
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rvallee
Senior Member (Voting Rights)
I'm not sure there's much strategy involved. The ship is sinking and they're just randomly throwing poop around to delay the consequences. In the end they are making everything worse for themselves but it's purely reactive to circumstances they never imagined would ever happen.
They may think very highly of themselves but this is much like with Watergate: "the truth is, these are not very bright guys, and things got out of hand".
Esther12
Senior Member (Voting Rights)
I think we've made things more difficult for ourselves with premature confidence. Looks to me as if they're winning, and now seem quite likely to get away with their BS. When was the last time there was a competent story about PACE in the mainstream media? And this is before Cochrane have re-released Larun's review, which will only make things worse.
Caroline Struthers
Senior Member (Voting Rights)
There was a published protocol for a review using individual patient data. But then the full review was rejected for publication because of extremely critical review. I think that means they withdrew the published protocol meaning the review was totally abandoned. I am sorry to have caused more confusion than necessary.