Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

Snow Leopard said:
The average medical practitioner (for example, the GP I saw who looked up CFS on Wikipedia) does not look very deep at the evidence and still expects the Cochrane brand to do the thinking for them.
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That may be so but I suspect very few actually look at Cochrane reviews. The great majority will look at government guidelines. If Wikipedia is misleading then if NICE changes its mind it can be documented there.
 
Jonathan Edwards said:
That may be so but I suspect very few actually look at Cochrane reviews. The great majority will look at government guidelines. If Wikipedia is misleading then if NICE changes its mind it can be documented there.
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NICE won't change their mind until the article is retracted. I'd bet a reasonable amount of money on it.

Those in charge of government policy want to be seen as doing something. They expect to receive more criticism if they recommend nothing, compared to doing something ineffective. Their fallback literally is that there are no other treatments other than what Cochrane reviews recommend therefore that is what they are going to do. Government policies are based on public perception (face), not quality of the model or evidence.
 
Snow Leopard said:
NICE won't change their mind until the article is retracted. I'd bet a reasonable amount of money on it.
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Actually I think we can be pretty sure that NICE are making their own analysis. (They said they would and I have reasons to think they are sticking to that.) Cochrane reviews are a source for NICE but NICE does not use the Cochrane GRADE assessment per se. The people on the NICE committee are 100% aware that there are problems with the review.

Whether or not NICE change their mind is dependent on completely different issues as far as I can see. Policy is not dependent on public perception. It is dependent on various viewpoints on the committee. Those viewpoints we can expect to be varied. Some may involve personal competing interests. There isn't a 'government' wanting to do something in all this. Like most situations it is just who happens to be there at the time. I cannot think of anyone on the committee who wants to put a 'government' face on things. Their agendas are other things.

(The people who set the committee up might have a more institutional viewpoint, but they are not the committee.)
 
Kalliope said:
Thanks. I've sent a FOI-request for the documents. Doubt they will contain anything of interest, but just to be sure.
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FOI request granted. They were just emails from someone complaining to the Norwegian Institute of Public Health for having been denied access to documents with case numbers 2017/10566 Documents nr. : 12 and 13.

These documents have later been released and are included in @Michiel Tack 's blog post "The Cochrane correspondence"
https://mecfsskeptic.wordpress.com/2019/07/03/the-cochrane-correspondence/
 
NelliePledge said:
Surely enough of the discussion is out in the open that whatever happens anyone claiming this review is authoritative is going to look foolish even if it isn’t retracted
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Most will never hear about it and dismiss it without reading any of it whenever someone would link to them.

It's the asymmetry of bullshit, it takes disproportionate effort to counter disinformation than it takes to make it in the first place. And there is far too much sunk cost to the whole thing to go back without jeopardizing the second golden age of magical psychology.

In hindsight it will be damning as hell and serve as indisputable evidence for lawsuits, but disbelief will have to be suspended first.

Of course until then it's still fully worth putting pressure on the organization and making them respond and acknowledge whatever happens next, although most likely is about the same as the SMILE paper, modified heavily but with the same recommendations.
 
The Cochrane Handbook for Systematic Reviews of Interventions was updated in July 2019
The Cochrane Handbook for Systematic Reviews of Interventions is the official guide that describes in detail the process of preparing and maintaining Cochrane systematic reviews on the effects of healthcare interventions. All authors should consult the Handbook for guidance on the methods used in Cochrane systematic reviews. The Handbook includes guidance on the standard methods applicable to every review (planning a review, searching and selecting studies, data collection, risk of bias assessment, statistical analysis, GRADE and interpreting results), as well as more specialised topics (non-randomized studies, adverse effects, economics, patient-reported outcomes, individual patient data, prospective meta-analysis, qualitative research, reviews in public health and overviews of reviews).
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We are pleased to announce that the Cochrane Handbook for Systematic Reviews of Interventions, Version 6, has been completed. A second edition of the book version of the Handbook is now in press and will be published by Wiley in October 2019. All the chapters contained in the printed version will be freely available online in browsable form, and this online version will provide additional chapters and supplementary material mostly specific to the Cochrane context. The chapters from the Version 6 book are all now available as PDF chapters to registered Cochrane contributors (Archie login required)
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Trial By Error by David Tuller: What's up With Cochrane's Exercise Review?

On June 17th, Cochrane announced that it had received a revision of a much-contested review of exercise therapy for treatment of chronic fatigue syndrome (as the organization has long called the illness or cluster of illnesses also referred to as myalgic encephalomyelitis, CFS/ME, and ME/CFS). In a posted statement, Cochrane noted that “the process has taken longer than hoped; the amended review is being finalised and it will be published during the next 2 months.”

Well, it seems like the process continues to take “longer than hoped,” since it is now more than three months since that notice was posted.
 
unfortunate that if anyone does a google search on 'cochrane review exercise for chronic fatigue syndrome', although the Vink paper comes up it only shows the first para of the introduction.
A recent Cochrane review of graded exercise therapy (GET) for chronic fatigue syndrome (CFS) concluded that GET is effective and safe (Larun et al., 2017). The review was to determine the effects of exercise therapy for patients with CFS as compared with any other intervention or control.8 Oct 2018
Graded exercise therapy for myalgic encephalomyelitis ...

https://www.ncbi.nlm.nih.gov › pmc › articles › PMC6176540
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so unless someone then reads the article it gives the impression that the review was sound. Something to bear in mind if anyone does a similar article.
 
Sly Saint said:
unfortunate that if anyone does a google search on 'cochrane review exercise for chronic fatigue syndrome', although the Vink paper comes up it only shows the first para of the introduction.
A recent Cochrane review of graded exercise therapy (GET) for chronic fatigue syndrome (CFS) concluded that GET is effective and safe (Larun et al., 2017). The review was to determine the effects of exercise therapy for patients with CFS as compared with any other intervention or control.8 Oct 2018
Graded exercise therapy for myalgic encephalomyelitis ...

https://www.ncbi.nlm.nih.gov › pmc › articles › PMC6176540
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so unless someone then reads the article it gives the impression that the review was sound. Something to bear in mind if anyone does a similar article.
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@Mark Vink
 
Sly Saint said:
unfortunate that if anyone does a google search on 'cochrane review exercise for chronic fatigue syndrome', although the Vink paper comes up it only shows the first para of the introduction.


so unless someone then reads the article it gives the impression that the review was sound. Something to bear in mind if anyone does a similar article.
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Yikes! That's very unfortunate and indeed something to bear in mind for future such articles! Maybe 'erroneously concluded' or 'concluded on non-robust evidence', something along those lines, so that casual readers only looking at the first para don't get the completely unintended impression that the research reached sound conclusions.
 
I have been hearing from people I see (even physical therapists and occupational therapists) that they're aware that GET is useless because the big trial had overlapping entry and outcomes criteria (And other, difficulties, but this is the one most recently remarked upon to me). They're also aware that Mayo Clinic is still saying incorrect things, but that Kaiser and CDC have changed course.

So I think it matters less what Cochrane and Mayo do than it previously did, as one way or the other the word is getting out. I imagine Miriam Tucker, @dave30th , Lucinda Bateman, @Tom Kindlon , Workwell, @Webdog, @Mark Vink, and everyone else who has been working hard to educate people and analyze the papers have been making a difference.
 
That's good to hear, @WillowJ, every small victory is important, but there is still a very long way to go to get all health professionals on board. I think what NICE, Cochrane, Mayo etc do is still vitally important to most of us.

There are still, in the UK and some other countries, funded trials of GET/CBT variations and awful papers being published, and patients being referred to clinics for inappropriate 'therapy'. None of the papers have been retracted, text books and medical courses don't acknowledge the problem etc etc.
 
Marit @memhj said:
2017/10566 - F08 Exercise Therapy for chronic fatigue syndrome - Cochrane review

https://einnsyn.no/saksmappe?id=http://data.einnsyn.no/noark4/Saksmappe--983744516--10566--2017
View attachment 7687
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Andy said:
Just to clarify for people, the website Marit links to is the source of these documents.
About eInnsyn
eInnsyn is a joint publication service for government agencies and the City of Oslo. The agencies use the service to publish their public records online, and the public records are then gathered in a common database that is searchable for users. Councils and committees in the city of Oslo publish their political proceedings and meetings in the same database.

In eInnsyn you may search full text documents and request access to public documents that have not been published. When you request access to a document that is not published, the request is sent to the agency responsible for the record entry. The request is then processed by the agency as a request for access, and you receive a response directly from the agency.
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In order to be able to read the correspondence, I needed to put the e-mail snipptes included in the documents in chronological order into one single document.

In case anyone else finds this helpful, I leave here my excerpt of the entire correspondence from May 2019 (as requested and documented by @Marit @memhj ) in a single document.

Edited to add:
Didn't excerpt the main part of the first e-mail from 13.05.2019 about the changes in the revised review. Now added in a separate document.

Apologies for any confusion.
 

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Trish said:
That's good to hear, @WillowJ, every small victory is important, but there is still a very long way to go to get all health professionals on board. I think what NICE, Cochrane, Mayo etc do is still vitally important to most of us.

There are still, in the UK and some other countries, funded trials of GET/CBT variations and awful papers being published, and patients being referred to clinics for inappropriate 'therapy'. None of the papers have been retracted, text books and medical courses don't acknowledge the problem etc etc.
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Yes, certainly there's more work to do.

I just am pleased to note that we've made a tangible beginning. And we're getting more people to help.

Harvard and other places are onboard. That should help with the textbooks, eventually.

The current situation is unlikely to last forever, and stuff is in progress to change it. There's a light at the end of the tunnel.
 
Sly Saint said:



"The Bill Silverman Prize
Purpose
Please note that this Prize is not for the preparation of a Cochrane Review; rather, it is for a published paper which demonstrates originality and critical thinking, either in evaluating any aspect of the preparation, maintenance or dissemination of Cochrane Reviews or about the work of Cochrane more generally. It should be of high quality, have been accompanied by constructive suggestions on how the relevant aspects of Cochrane’s work could be improved; and have had, or is likely to have, a positive impact on the scientific quality, relevance and use of Cochrane Reviews.

Eligibility
Peer-reviewed papers that fulfil the criteria described above under ‘Purpose’, and were published in the twelve-month period 1 April 2018 to 31 March 2019 are eligible for nomination in 2019.
"

pity didn't find out about this earlier (nominations close 2nd Aug).
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@Michiel Tack maybe you/others could try again this year?

eta:
Michiel Tack said:
Just saw this. Wonderful idea. I've tried to nominate him with this short text:

"Mark Vink wrote two detailed critiques on Cochrane's reviews on CBT and exercise therapy for ME/CFS. His analysis helped Cochrane to adjust and update the review on exercise therapy for ME/CFS. Vinks efforts are quite exceptional given how sick he is due to ME/CFS. In his papers he thanks his parents for writing out his speech memo's as he is too ill to write."
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