Coyne: Patients writing about their health condition, abused by a peer reviewer, silenced by BMJ

AndyPR

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Follow up to the blog discussed here http://forums.phoenixrising.me/inde...-authors-who-were-abused-by-a-reviewer.51029/

Recently I blogged about authors who were informed by The BMJ that they must keep a review confidential despite having submitted a manuscript under the journal’s laudable policy of open peer review. I did not actually post the review in its entirety because doing so might make it more difficult the editors of The BMJ making timely, appropriate amends, including an apology to the authors.
I contacted a number of The BMJ editorial staff, starting with the action editor who handled the manuscript. I either got no response or I was told the silencing of the authors concerning their mistreatment was not their doing or anything with which they were willing to intervene.

I am now providing the review, which is patently unprofessional, despite coming from a psychiatrist.


The reviewer challenges whether the authors relied on self-diagnosis of chronic fatigue syndrome, perhaps bolstered by doctor shopping until they found agreement.
https://jcoynester.wordpress.com/20...bused-by-a-peer-reviewer-and-silenced-by-bmj/
 

RogerBlack

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To quote Coynes excellent summary of it
  1. The reviewer recommends the manuscript be published without the authors being given the opportunity of revision. The intent of this is that it would draw Rapid Responses protesting what patients with chronic fatigue syndrome have to put up with, including from patients who, like the authors, have the condition.
  2. The reviewer dislikes this paper and yet still want it to be published.
  3. The reviewer claims the manuscript insults and demeans other patients.
  4. If the paper is published and the PACE investigators don’t respond as the reviewer hopes, the reviewer will post a comment to the authors “Shame on you.”
  5. The authors should just move on and be done with the PACE trial.
  6. The reviewer notes that the paper is billed as a collaboration between patients and scientists, but questions whether any of the authors qualify as “clinicians” or “scientists.”
  7. The reviewer expresses doubts that the patients meet criteria for chronic fatigue syndrome.
  8. The reviewer reiterates the doubt the patients meet criteria for chronic fatigue syndrome and suggests that they were erroneously self-diagnosed.
  9. The reviewer suggests that the authors were erroneously self-diagnosed and went doctor-shopping until they found agreement.
  10. After earlier mentioning that he had not obtained the author’s published review, he questions whether it is a major review.
  11. The reviewer asserts that the PACE investigators can defend the recovery rates they claimed in the PACE trial.
  12. The reviewer questions whether the authors are merely writing about themselves rather than persons with diagnosed chronic fatigue syndrome.
  13. The reviewer claims the authors insult patients with genuine chronic fatigue syndrome when they challenge Wessely’s model emphasizing “fearful cognitions.”
Reviewer 1 was positive! And indeed raised additional problems with the original research leading to this analysis.

The BMJ response was ""We note that the reviewers were more positive than the editors were about your paper, but ultimately did not persuade us that we should publish it.""


I note in passing that I picked up a copy of
"Coyne of the Realm on Becoming a Citizen Scientist" from
https://www.coyneoftherealm.com/collections/frontpage
 

Snowdrop

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I'm going to venture a guess that when all is said and done that the psychiatrists in the UK involved in and who have shared opinions on the PACE trial will simply dismiss this whole horrible debacle as 'we were never at any time engaged in studying the disease of all the PACE trial critics, we have always been studying chronic fatigue of unknown origin -- nothing has changed'.

Except of course we know we have all the documentation that says otherwise.
 

Orla

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Is anyone else having trouble sharing this article on facebook? It keeps telling me it doesn't recognise the URL.
 

Orla

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Works for me. Have you gone through to the blog itself and taken the URL from there, to make sure you're getting the full URL?
Thanks Any, yes I have tried that. The picture comes up and everything but then it won't post it when I hit post. I'll just wait until one of my friends posts it on facebook and then I'll share their post. It happened to me before with an article of his, but never happens to me with anything else I try to post.
 

user9876

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I'm going to venture a guess that when all is said and done that the psychiatrists in the UK involved in and who have shared opinions on the PACE trial will simply dismiss this whole horrible debacle as 'we were never at any time engaged in studying the disease of all the PACE trial critics, we have always been studying chronic fatigue of unknown origin -- nothing has changed'.

Except of course we know we have all the documentation that says otherwise.
They clearly have shared views. What I think is interesting is that getting informed consent from a patient is not a community responsibility but a personal one. If they are using the PACE study to assert benefits and lack of harm along with ignoring the criticism of PACE and patient reports then I would see that as a failure of their personal duty to get informed consent. Which I think puts them in an interesting legal position.
 

AndyPR

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Can somebody explain what was the tile of the submitted paper and what is it about, a critic of PACE or something unrelated??/
http://forums.phoenixrising.me/inde...liminary-re-analysis-of-the-pace-trial.48323/
Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial
Carolyn Wilshire, Tom Kindlon, Alem Matthees & Simon McGrath
 

trishrhymes

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I think it is this paper. The BMJ refused to publish it. I think the review was written some time ago when it was offered to the BMJ, but has only just been revealed.
 

JayS

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I don't think it's the same paper. The reanalysis paper appeared in a time frame that doesn't suggest there was time between when the data was released & the paper was published, if in between it was sent to the BMJ & enough time spent for review & consideration resulting in refusal to publish. When Carolyn Wilshire put this up on Twitter I got the sense she had received this fairly recently, not that she'd been sitting on it for awhile, and then suddenly put it up on Twitter months after the paper was actually published, saying 'now I know what pwme are up against'. I could be wrong, of course. But then also I kind of doubt the BMJ would've been the first place the reanalysis paper would've been sent. There was an urgency to get that out there, and if the BMJ hasn't been the most unfriendly journal towards ME historically, I don't know what is.
 

Woolie

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If BMJ hasn't been the most unfriendly journal towards ME historically, I don't know what is.
Agreed. But its still kind of interesting to see what they did when put to the test. Patient-led research, my a*s*! :mad:

Its the same old story: patient-led research, but not for patients with ME, they are just plain crazy. Yep, some patients are more equal than others.

If nothing else, this whole thing has been very revealing.

(a*s*: UK spelling, somehow much stronger!)
 

Chrisb

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Can any of you scientists explain the normal review model?

I had always assumed that the editor identified reasonably disinterested experts in the field, sought such acceptable alterations as could bring about unanimity, and possibly have a casting vote himself in the event of failure to agree.

This case suggests a completely different model in which the paper is submitted to people who might reasonably be expected to have widely divergent views on it and then after a sort of adversarial process, make up his own mind on the merits of the paper based on the reviews.

It is hard to understand whether the review in this case should be regarded as "perverse", in that it recommends publication on grounds which would usually suggest refusal, or whether there is a "private language" shared by editor and reviewer which allows for the "ironic review" to be correctly interpreted.
 

AndyPR

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I don't think it's the same paper. The reanalysis paper appeared in a time frame that doesn't suggest there was time between when the data was released & the paper was published, if in between it was sent to the BMJ & enough time spent for review & consideration resulting in refusal to publish. When Carolyn Wilshire put this up on Twitter I got the sense she had received this fairly recently, not that she'd been sitting on it for awhile, and then suddenly put it up on Twitter months after the paper was actually published, saying 'now I know what pwme are up against'. I could be wrong, of course. But then also I kind of doubt the BMJ would've been the first place the reanalysis paper would've been sent. There was an urgency to get that out there, and if the BMJ hasn't been the most unfriendly journal towards ME historically, I don't know what is.
OK, investigated a bit and it does look like it's a new, as yet unpublished paper. This is where Carolyn revealed the review.

Down the comment feed Carolyn notes

@Tom Kindlon can you confirm which paper this review applies to? I'm guessing with your recent collaboration with Carolyn that you might know.
 

Woolie

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Can any of you scientists explain the normal review model?

I had always assumed that the editor identified reasonably disinterested experts in the field, sought such acceptable alterations as could bring about unanimity, and possibly have a casting vote himself in the event of failure to agree.

This case suggests a completely different model in which the paper is submitted to people who might reasonably be expected to have widely divergent views on it and then after a sort of adversarial process, make up his own mind on the merits of the paper based on the reviews.
Well, most journals will just seek experts on the topic or perhaps the methodologies used in the paper. That's the end to it. Often they seek two, and if they massively disagree, another may be sought. It depends on the editor - some editors will consider the paper carefully too and may use their discretion in case of disagreement. Others will just leave it all to the reviewers, and go for the majority vote.

If the article is in an area with high disagreement, the approach is really at the discretion of the journal. Many will be guided by the authors' recommendations (specified at submission). So that at least some of the reviewers will be coming from the same standpoint as the authors. They might also choose someone from the other standpoint for balance. If the article's a critique, some will also send it to the authors of the original paper (but won't necessarily base their decision on what these people recommend; its more to get an idea of quality of arguments).

BMJ is a bit more like a magazine than a regular academic journal. So they're interested in whether you can make a good story that will entertain (alright, educate) their readers. They do send for referee reports, but they consider other things besides quality
It is hard to understand whether the review in this case should be regarded as "perverse", in that it recommends publication on grounds which would usually suggest refusal, or whether there is a "private language" shared by editor and reviewer which allows for the "ironic review" to be correctly interpreted
Yes, its a rather sneaky polemic technique, from what I can see, with the intention of preventing publication of the article, while superficially acquiescing to its publication.
 
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