Cochrane ME/CFS GET review temporarily withdrawn

Lucibee said:
The reason that 'qualitative studies' are considered to be of 'no value' is because they are incredibly hard to analyse properly.
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My understanding from supervising the physios thirty years ago is that 'qualitative studies' are by definition studies that do not attempt to generate any numbers that could be compared with controls. All my histological work was qualitative but I did not call it that because something was either there or not. All the suggestions the physios made for qualitative studies they wanted to do seemed to me to be incapable of providing any reliable data.
 
Esther12 said:
I think it's actually the opposite. Price did the 2004 version: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub2/full

Larun then joined, and used the 2004 version of the basis/protocol for her review (although she then deviated from that protocol in the manner noted by Courtney).
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So it looks as if the 2004 review was authored by someone in Canada who runs a systematic review factory, a psychiatrist at Kings and a psychiatrist at Oxford.
 
Jonathan Edwards said:
So it looks as if the 2004 review was authored by someone in Canada who runs a systematic review factory, a psychiatrist at Kings and a psychiatrist at Oxford.
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Acknowledgements:
We would like to thank Dr Peter White for advice and additional information, Dr Alison Wearden and Dr Karen Wallman for additional information, and Dr Rona Moss‐Morris for information on the unpublished studies, the CCDAN editorial base for support and advice and the external referees for their comments on the first draft of this review.
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So it's an insular, self-reinforcing network of peers who agree with one another, publish together, consult on each others' work, review their own and collaborators' work and promote their and their colleagues' work. No declaration of interest from any of the authors.

Seems fundamentally broken.

You almost have to laugh that they put the notice that the review is being updated at the bottom of the page.

How is that the gold standard in medicine? It explains so much, though.
 
Here are other CFS GET/CBT reviews authored by Jonathan R Price, co-author of Larun review:

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/full
Cognitive behaviour therapy for chronic fatigue syndrome in adults
Cochrane Systematic Review - Intervention Version published: 16 July 2008

https://www.researchgate.net/public..._for_chronic_fatigue_syndrome_Cochrane_Review
Exercise therapy for chronic fatigue syndrome (Cochrane Review)
Feb 2004

https://www.researchgate.net/public...ic_fatigue_syndrome_in_adults_Cochrane_Review
Cognitive behaviour therapy for chronic fatigue syndrome in adults (Cochrane Review)
February 2000 
 
Lucibee said:
Which is a shame, because that's why patient surveys are dismissed so readily (I know, I know, there are other issues too).

But all of these studies are still based on qualitative data. They've simply taken qualitative data (the questions in the SF-36, CFQ etc) and produced a number out of them, that they can then claim is 'quantitative'. Bingo! That it actually strips out all the interesting information is disregarded.

The reason that 'qualitative studies' are considered to be of 'no value' is because they are incredibly hard to analyse properly.
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Yes! Taking woolly descriptions and arbitrarily ascribing numbers to them, does not suddenly and magically give them crystal clarity - just the illusion of it to those susceptible to being fooled by it. It feels like a con trick. Can imagine a pilot asking his co-pilot what altitude they are at, and hears the reply "fairly high", and the pilot saying "Oh, 30,000 feet then" ... splat into the mountainside, given they were really at 20,000 feet.
 
rvallee said:
Acknowledgements:


So it's an insular, self-reinforcing network of peers who agree with one another, publish together, consult on each others' work, review their own and collaborators' work and promote their and their colleagues' work. No declaration of interest from any of the authors.

Seems fundamentally broken.

You almost have to laugh that they put the notice that the review is being updated at the bottom of the page.

How is that the gold standard in medicine? It explains so much, though.
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Wow, it explains everything.

But as someone without a background in the sciences. Why on earth was Cochrane ever considered the gold standard of medicine? There doesn't seem to be any quality control at all. Yet the supposed quality control is the entire raison d'etre behind Cochrane.
 
Daisymay said:
https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/full
Cognitive behaviour therapy for chronic fatigue syndrome in adults
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CochraneLibrary said:
CFS has had many names in recent decades. These include Royal Free disease, Iceland disease, neurasthenia, myalgic encephalomyelitis ('ME'), and post‐viral fatigue syndrome. All these appear to describe groups of patients with a similar problem, that is, persistent medically unexplained fatigue which causes disability and distress
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It's hard to believe how bad the greatly respected Cochrane Review is. They conflate neurasthenia (which is viewed as psychological) with ME. They also define the illness as merely unexplained fatigue rather than an intolerance of exercise & exertion (which is what true ME is). In essence they have diluted the definition of ME. If I didn't know any better I'd say they are trying to bury ME.

All this bad science yet Ben Goldacre remains silent on the subject.
 
Article from a Norwegian news site about research, with comments from The Norwegian Institute of Public Health.

Forskningno: Vil trekke tilbake ME-forskning etter kritikk
google translation: Will withdraw ME research after criticism

The article gives a bit background and mentions @dave30th 's letter signed by 40 professionals about the Cochrane review and to Mark Vink's research article.

It also shares some correspondence between The Norwegian Institute of Public Health and Cochrane, as well as to the journalist:
On September 10, Larun received a letter from Cochrane, announcing that they were temporarily withdrawing the study because Larun had not responded to previously submitted criticism well enough.

"We do not see that withdrawal is a proportionate response," says Trygve Ottersen, acting director of the Public Health Institute in a reply to Cochrane.

He also writes that it is unreasonable if the standard for evaluating this report should be different from that of other Cochrane reports.

The researchers have now gone through the overview article once more. The Norwegian Institute of Public Health says in an e-mail to Forskning.no that they believe an audit will lead to a sensible solution.

In the audit, the researchers have reviewed all the inputs that have come, including the proposed new accounting methods. This has led to some changes in how uncertainties and findings are described.

"But the main message is still that graduated exercise can help alleviate some symptoms of chronic fatigue syndrome, especially fatigue, Ottersen says to Cochrane.

Furthermore, he writes that there have been some new studies published about graded training as treatment. But that these do not challenge the conclusion in Larun's overview study.
"It is therefore difficult to see how a withdrawal of the precent study will serve medical environments or patients.
 
Kalliope said:
He also writes that it is unreasonable if the standard for evaluating this report should be different from that of other Cochrane reports.
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He does not seem to realise that the problem has been that the standard for evaluating this report was never the same as for other reports. So he is right that the standard should be no different - it should be equally rigorous.

I find it very hard to understand how so many people in the area of quality control in research have no idea of the basics.
 
Jonathan Edwards said:
He does not seem to realise that the problem has been that the standard for evaluating this report was never the same as for other reports. So he is right that the standard should be no different - it should be equally rigorous.

I find it very hard to understand how so many people in the area of quality control in research have no idea of the basics.
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When I was a medical student in the 1980s ,we had a 6 month course in statistics with an exam, and it wasn't just basics. Before starting MD research we all had a course in methodology/ statistics again. In journal clubs, the methodology of papers carried more weight than the results. What happens nowadays?
 
Anyone fancy becoming a Cochrane peer reviewer?

https://cmd.cochrane.org/peer-referees
https://join.cochrane.org/join-cochrane

We are always looking to add to our pool of peer reviewers. You don't need to be an expert in systematic review methodology. We really value the input of those with lived experience of common mental disorders whether you are a patient, carer, member of the public or healthcare provider. Becoming a Cochrane peer reviewer with us is a great way to increase your research skills and engage with evidenced based decision making in our area.
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They provide training. It sounds as if it would be impossible for many with ME, but perhaps someone might be interested in finding out more.
 
Skycloud said:
Anyone fancy becoming a Cochrane peer reviewer?

https://cmd.cochrane.org/peer-referees
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That looks like being for the mental health section. Hopefully ME is being moved out of there. The stuff I received from the mental health section suggested to me that they were a group of touchy-feely dreamers with no real idea what they were about. On the other hand if ME stays there it might be worth helping with some sensible opinions.
 
Kalliope said:
In the audit, the researchers have reviewed all the inputs that have come, including the proposed new accounting methods. This has led to some changes in how uncertainties and findings are described.

"But the main message is still that graduated exercise can help alleviate some symptoms of chronic fatigue syndrome, especially fatigue, Ottersen says to Cochrane.
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*sigh*

They (of course) attempt to do just what several of us suspected... I do wonder what Cochrane's respons to the updated version will be, crossing fingers they will be able to see throug any attempts to do minor changes and hiding bias.

Furthermore, he writes that there have been some new studies published about graded training as treatment. But that these do not challenge the conclusion in Larun's overview study.
"It is therefore difficult to see how a withdrawal of the precent study will serve medical environments or patients.
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Is this true? Does anyone know what studies he is implying?

Overall, this article is much better - and gives the general impression that this is about the science, even if Trygve Ottersen tries to downplay the validity of the claims made by critics. Trude Schei from the Norwegian ME association is given a larg'ish comment towards the end, pointing out the spin about "angry activists".

That the acting director of the Publig Health Institute is himself involved in this, I find quite worrisome. Didn't realise how very much intertwined they are.

"We do not see that withdrawal is a proportionate response," says Trygve Ottersen, acting director of the Public Health Institute in a reply to Cochrane.
 
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