Cochrane ME/CFS GET review temporarily withdrawn

Kalliope said:
A letter to the editor in a Norwegian news site about medicine.

It says that the withdrawal from Cochrane is good news for the patients, and it's strange it didn't happen earlier. Thousands of patients have suffered under the misconception that graded exercise and CBT had some effect on ME. This damage can not be undone. What's important for the future is to make sure this misunderstanding is removed, and then discuss how this could happen.

The National Competence Service must give updated advise. It might be necessary to replace some people in this service.
It is crucial to encourage patients to seek advice from patient organisations. It's obvious that the patients have a better understanding of their situation than some specialist environments. All cooperation with alternative therapists must cease to exist.

Sigmund Olafsen: En lettelse for ME-pasienter
google translation: A relief for ME patients
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An excellent piece written by Sigmund Olafsen. What is interesting now, is if someone replies. Some years ago, this would probably trigger some articles about how misguided the patients are, not knowing their best interest. My guess now is that eventually Henrik Vogt will respond in that way. But I’m not sure. I think Nina Steinkopfs petition has left him more powerless than before, and maybe he will see that an answer may blow back in his face. Maybe, or maybe not.
 
benji said:
An excellent piece written by Sigmund Olafsen. What is interesting now, is if someone replies. Some years ago, this would probably trigger some articles about how misguided the patients are, not knowing their best interest. My guess now is that eventually Henrik Vogt will respond in that way. But I’m not sure. I think Nina Steinkopfs petition has left him more powerless than before, and maybe he will see that an answer may blow back in his face. Maybe, or maybe not.
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Ans so far only positive comments. Usually there will be at least one doctor in the comments going on about how there's a lot of proof that ME is psychological or just lazy people or whatever, but I guess this is a lot harder to attack from that angle. Hopefully!
 
andypants said:
Ans so far only positive comments. Usually there will be at least one doctor in the comments going on about how there's a lot of proof that ME is psychological or just lazy people or whatever, but I guess this is a lot harder to attack from that angle. Hopefully!
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That is quite positive, I agree.
That said, the comment field at Dagens Medisin is not reliable. Anyone can post anything, make up a fake email address. This have been exploited, and can result in fun read sometimes. When “KS”answer “SK”, when “doctor nr 100” answer “doctor nr 10” and when Marit is answered by Mareritt (nightmare). This has been particularly obvious when the theme is ME. Some of the doctors I believe are real doctors, but certainly not all.
 
I'm not really worried about Vogt in this, he doesn't have that much impact. I suspect many healthcare workers don't take him very serioulsy.

What I do wonder, is the respons from Larun et. al, or the competance service. Surely they must feel the need to defend themselfs? This is a hard hit on boths professional CV. And the national insitutions have high trust, so their angel on this have the possibility of shifting opinions.

On the other hand, medicals also have high trust in cochrane - so they will need a very convincing rationale to sway people. I do think, that whatever happens next, the exellent coverage in "Dagens medisin" will make most doctors aware that the science behind the recommended therapies for ME might be on very shaky ground.

Couldn't figure out how to add a photo, but the story about cochrane withdrawing is still front page on "Dagens medisin" - and the most read article :thumbup: Even for people not bothering to read the story, the preview on the front page includes enough information - headline "removing cochrane recommendations":

Senior researcher Sigmund Olafsen thinks it was time for the recommendation on cognitive therapy and graduated training against ME to be removed from the Cochrane Library.
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And regarding the ongoing petition against the competance service - leeking this to the press (and the support letter from scientists) couldn't have better timing! :thumbup:
 
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inox said:
Still not withdrawn - it's become part of my morning routine, the first thing to check :rofl:

I'm sure they are in discussions now - as they should have been many, many months ago...
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They can discuss all they like but where are they actually going to find any answers to the issues raised. They don’t have any. The only solution is to start again and do a proper review.
 
Barry said:
So if it is temporarily withdrawn from publication, why is it still accessible on Cochrane's website? Doesn't look withdrawn to me, nor does it say anywhere that I can see, that it is withdrawn; not a whisper.
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That's the great irony in all of this - it haven't actually been withdrawn yet. The e-mail that enden up in Reuters was a request to the reviewers, for them to agree.

Emails seen by Reuters show editors at the influential Cochrane Review journal asking researchers who conducted the analysis, which was published in April 2017, to agree to it being temporarily withdrawn.
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Going public blaming patients for pressuring, they probably hoped to get Cochrane to back down and leave the review up? But alast, they ended up with it beeing reported and understood as already withdrawn - even if it hasn't happened yet.

So we can't really be _absolutely_ sure yet, even if I can't see any other outcome likely?
 
inox said:
That's the great irony in all of this - it haven't actually been withdrawn yet. The e-mail that enden up in Reuters was a request to the reviewers, for them to agree.
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Esther12 said:
It's not been withdrawn yet. Still waiting for an official statement from Cochrane about what's going on.
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And if the reviewers don't agree to its withdrawal (not before hell freezes over I imagine), then what? Do we know what the actual process is? Or is that a big Cochrane secret?
 
Barry said:
And if the reviewers don't agree to its withdrawal (not before hell freezes over I imagine), then what? Do we know what the actual process is? Or is that a big Cochrane secret?
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Not in detail, I guess, but there is information from cochrane linked earlier in the thread. As I remember, there is an option for the editors to override and make the decision - but that the norm is to try and make an agreement. There seemes to be focus on the autonomy of cochrane centers/groups, with central desicion making ment to be the final straw if everything else fails.

This is my understanding at least. :)
 
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