Cochrane ME/CFS GET review temporarily withdrawn

Jim001 said:
Ugh. Medscape ran the Reuters story

https://www.medscape.com/viewarticl...-N7xv7lW4KR1QH-yilJsDC0w4bvlZhXxVDKCbV6njY4MQ
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On the bright side, retracted studies are ever more common and now have shorter news cycles - but 'patient activists' causing a study to be retracted is new news, and may provoke some investigative journalism and the real issue of fraudulent science is exposed - that's a more provocative story that may gather traction than another ho-hum research withdraw story.
 
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ScottTriGuy said:
On the bright side, retracted studies are ever more common and now have shorter news cycles - but 'patient activists' causing a study to be retracted is new news, and may provoke some investigative journalism and the real issue of fraudulent science is exposed - that's a more provocative story that may gather traction than another ho-hum research withdraw story.
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I wonder if they've messed up by making this a bigger story than it would be.

Also, I've not seen an outpouring of outrage from researchers about this corruption of science. I wonder if their old tactics aren't working as well as they used to.
 
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"The best thing I’ve done from a sociological and community standpoint was to embrace the activists. Instead of rejecting them, I listened to them. I remember looking out a window and people on the lawn of the NIH were throwing smoke bombs. The Montgomery County Police were ready to arrest them and I said, ‘Don’t. Bring them up to my office so I can talk with them.’ The interaction with the activists was a major chapter in the 30-year journey of this [AIDS research]."

Anthony Fauci - Director of the National Institute of Allergy and Infectious Diseases (NIAID)



https://sciencespeaksblog.org/2011/05/17/anthony-fauci-reflects-on-30-years-of-aids/
 
Robert 1973 said:
I suppose the positive is that Cochrane will rapidly be learning who the real mob are, and how they operate.
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People and institutions can change, can learn and grow and improve. Can – to put on my cynical hat – realise where their own best interests lie.

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Esther12 said:
I wonder if they've messed up by making this a bigger story than it would be.
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A variation on the Streisand Effect

https://en.wikipedia.org/wiki/Streisand_effect

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Just worth repeating. The hypocrisy from Gerada is astounding and blatant. But unfortunately par for the course with these arse clowns.

large donner said:
Interesting Clare do you have a dog in this fight? Are you declaring a COI in your tweets. Patients COI? Laughable!

When the DWP helps to fund a study aimed at reducing benefits of sick people and those sick people point out flaws in the study often from their beds with no funding, just pen paper and calculators its just laughable that she should claim they are funded by powerful lobby groups.

I tell you what is funny though is that no one brought up COIs in this current twitter feed except her? Is this a little subconscious slip on her behalf?

Lets compare the COIs of people who have Insurance lobbying interests, high ranking government influence positions, knighthoods and years of poor quality studies behind them whilst in receipt of public money at the same time they admit to being behind PR stories in the SMC yet could not back up any dubious claims they made to the judge about patients in FOI hearings whilst at the same time refusing to realise data to prove their claims.

Then there's the patients whose interest is in getting better who have been helped by hundreds of independent scientists now signing letters and such pointing out flaws on the body of work from the above types of people. One of whom just so happens to be her husband which she fails to mention in her tweet whilst claiming patients should be declaring COIs.
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Barry said:
I think Cochrane have done this realising they stand on a cliff edge, and will have been closely following EC's and MS's massive own goals recently, and the general dismantling of the supposed science behind PACE etc
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Do you really think so? I hope you're right, but i have difficultly imagining that they're following that, or indeed very much regarding ME/CFS. It seems this withdrawl is a direct result of direct contact with them. I'd be amazed if they even knew about what MS/EC was doing.

I cant help but think that we shouldn't be getting quite so excited, they have temporarily withdrawn it (well not even that yet it seems) to allow those involved to answer questions. Surely that means it's entirely open as to whether they will reinstate it. I just dont want to get my hopes up only for them to be dashed when the BPSers & Larun etc etc bring their pressure to bear on Tovey. Temporarily withdrawing it just seems like an appeasement excerise to me. But i dont know much anything about the nitty gritty of how CC work, so i hope i'm wrong, ijust think we'd be wise to be a little more cautious in our excitement.
 
JemPD said:
I cant help but think that we shouldn't be getting quite so excited, they have temporarily withdrawn it (well not even that yet it seems) to allow those involved to answer questions. Surely that means it's entirely open as to whether they will reinstate it.
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I understand your caution but if Larun could answer the questions that have been asked she would would have done so by now. As the article states, it’s highly unusual to withdraw a review without the authors’ consent. To say that it has been temporarily withdrawn to give the authors time to respond is just, in my view, a polite way of saying, “we are removing your review, without your consent, because you have been unable provide adequate answers to the valid concerns that have been raised about it, and you appear to be incapable of so doing.”

[edit – typo]
 
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In fact what worries me the most is that once they've withdrawn it temporarily "for questions", they will have the opportunity to reinstate it with even more power than it held originally - ie as a review which was challenged, looked at again and found to be credible/reliable. Thus being even more of a cudgel to shut down appropriate scientific criticism & lead anyone outside the field who was beginning to get interesting/suspicious about the evidence, to be falsely reassured.
"Stop moaning - you activist patients, we've listened to your criticisms & investigated, we even withdrew the review for proper reassessment & it stands"

I just, well i smell a rat. I dont trust any of them, & the notion that they have finally seen the light is too good to be true iyam. I mean WE know that the evidence it's based on is staggeringly poor & that science is on our side, but to assume that they have finally seen the light because they've temporarily withdrawn something, seems a bit naive imho. Again i hope i'm wrong but the people involved are all chums & this could quite easily be a mere PR, manipulative exercise.
 
Robert 1973 said:
I understand your caution but if Larun could answer the questions that have been asked she would would have done so by now. As the article states, it’s highly unusual to withdraw a review without the authors’ consent. To say that is has been temporarily withdrawn to give the authors time to respond is just, in my view, a polite way of saying, “we are removing your review, without your consent, because you have been unable provide adequate answers to the valid concerns that have been raised about it, and you appear to be incapable of so doing.”
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Sorry @Robert 1973 we cross posted.

That is very plausible reasoning & i really hope you're right. But as we all know the continuing triumph & stronghold of BPS nonsense in the face of all logic & good science, is pretty implausible, & yet still it stands, so i wont count my chickens as i dont think i can take any more suckerpunches tbh.
 
Robert 1973 said:
I understand your caution but if Larun could answer the questions that have been asked she would would have done so by now
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Who's to say she hasnt? I mean we know she cant have answered tham satisfactorily, because there are no satisfactory answers. But that doesn't stop this temp. withdrawal being part of the game, & that Cochrane are doing this in order to silence criticism & bolster their flawed review (which they actually refuse to believe is such)... In the way i describe above.

And who's to say that Tovey or anyone has actually taken any of the questions seriously enough to actually ask them of her.... rather than a desire to make it look as if they have, - in order to be able to silence all these pesky criticisms & questions?

They are all, istm, either themselves master manipulators & politcal operatives, or being influenced & manipulated by them, so i just dont trust it at all.

edited - for clarity & to add... I suppose the only way to know is to wait & see what happens, so lol i will stop my nay-saying for now :)
 
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My your paranoid/suspicious @JemPD , I agree and don't blame you, and is it really paranoia if things have gone the way you suspect in virtually every previous case?

In case it's not clear, I hope you are wrong but experience suggest you are not, these people are sneaky, manipulative, erm.......can't think of anything else that doesn't break forum rules.

I/we have been kicked so many times that when I/we see something approaching it would be unwise to assume it's actually a nice cake, despite someone shouting it is whilst it's approaching. It's far more likely to be something else that has a picture of a cake on it, looks like a cake, but actually contains a brick, or is travelling at 700mph. etc.
 
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