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

Jonathan Edwards said:
It seems that pointing out that things are wrong has no traction any more in public discourse - whether politics or medicine
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Certainly don't mean this to be a political post, I just remember how shocked I was when I saw this three years ago:



Because it was the first time I had seen a politician brazenly admitting that feelings were more important than facts and treating the interviewer with mocking contempt for not getting it. Well now it's three years later and such an approach is totally unexceptional in politics and, seemingly, in medicine, with Wessely putting psychiatry at the heart of it and everyone, especially governments, happily going along with that. It's a great bandwagon for anyone who is so minded to jump on.
Snow Leopard said:
the most important thing is to have the patient to say they are better (at least somewhat). It does not matter if the patient is still ill and that their thoughts saying they are better are transiently biased and does not reflect the reality of their level of functioning.
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We are doomed :(
 
Snow Leopard said:
It is not merely that they ignore bias of unblinded studies, they actually believe that such bias of perception is the goal.
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YES! I think this is because psychiatry lives in a world where where they typically deal with behavioural problems that are due to faulty perceptions in the first place. If I refused to ever go out of the house in rural England because I was convinced I would get mauled by lions tracking me across the savanna, it would actually be very therapeutic for me to undergo treatment to help correct my screwed up perceptions. Biasing of perceptions from messed up back to normal is good.

But they are so self obsessed with this being the answer to everything and anything, they want to apply it to problems where perceptions are not at all skewed; they pursue it to the extent they try to prove perceptions are skewed, so they can still peddle their false doctrine. It's despicable - insist people have an illness of their definition, to match with the treatments they insist are the right treatments ... for the illness as they define it. This is so much akin to religion, and nowhere near real science.

ETA: And of course MS et.al. have retorted so many time, that it is "because that is how the illness is defined". But of course, whose definition is that?!
 
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Even in rural England there are places that if you go to you may be mauled by lions, so psychiatrists may be making assumptions even in that regard.

It is not an unfounded fear, it's just unlikely, if you haven't bought a ticket.

Pretty much everything people are, reasonably, afraid of is unlikely.

This does not make fear a behavioural problem. It makes it a sensible adaptation, something to modify behaviour to increase the odds in our favour.

This is not, if you are rational and unbiased, a bad thing.

It is people with the attitudes that psychiatrists promote that will lead to the death of millions, by encouraging people to believe it's safe to live in earthquake zones or inside a volcano, simply because they've been doing it for a while doesn't make it safe.

Thinking it is, not being afraid, trying to convince people they are unhinged if they have any concerns, that is a behavioural problem, moving somewhere where the damn ground stays were it's supposed to is not.

Similar things could be said about many other issues, where a psychiatrists job is to keep the status quo going, and classify anyone who thinks the status quo is absurd, dangerous, or simply a bad thing, as needing 'treatment'.

This is their function in society, it is not to help patients, it's to make sure the status quo and the interests of the powerful, are maintained.
 
Wonko said:
Even in rural England there are places that if you go to you may be mauled by lions, so psychiatrists may be making assumptions even in that regard.

It is not an unfounded fear, it's just unlikely, if you haven't bought a ticket.

Pretty much everything people are, reasonably, afraid of is unlikely.

This does not make fear a behavioural problem. It makes it a sensible adaptation, something to modify behaviour to increase the odds in our favour.
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But I think you know what I was saying @Wonko :). Here in S4ME I strive to see both sides because it is important for context and objectivity.

There are some problems that are due to distorted perceptions, and can be fixed by perception / behaviour-modifying treatments. Indeed I think it strengthens our argument to acknowledge this - it becomes easier to clarify how treatments valid for one type of condition are so desperately invalid for another. If you suffer from a perceptions / behaviourally-rooted condition, then perception / behaviour-modifying treatment could be applicable; if you don't then it isn't ... yet they insist otherwise, they seem themselves to suffer from seriously distorted perceptions.
 
TiredSam said:
We are doomed :(
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For a while. It's a self-defeating ideology. Millions will suffer, possibly for years, but the foundations are so weak they won't hold up very long once they are at full speed and billions have to be accounted for. For now it stays within the echo chamber but once it gets mass implementation people not wedded to the ideological foundations, merely interested in the fiscal benefits, will demand to see their ROI, and it won't be anywhere to be found.

It will suck, it already does, but this mad project has the seeds of its own demise baked into it. The best we can do is document our objections as loudly as possible for when we inevitably have to put weight behind our "WE TOLD YOU SO" slaps.

These people have the confidence to go ahead because they assume no consequences will happen to them when it fails. This delusion can be dispelled. With effort, unfortunately, but their confidence definitely does not rise to the level at which they would accept responsibility for failure.

They look to the past where such mistakes lead to no one being punished and think it will happen once again. What a difference the Internet makes. Those mistakes used to happen behind closed doors and with documentation safely stored away from grabbing hands, where it can be burned if necessary. Not anymore. We need to make this as public as possible, hold them up to take responsibility in the future.
 
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TiredSam said:
We are doomed
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Plus ça change:

Turning and turning in the widening gyre
The falcon cannot hear the falconer;
Things fall apart; the centre cannot hold;
Mere anarchy is loosed upon the world,
The blood-dimmed tide is loosed, and everywhere
The ceremony of innocence is drowned;
The best lack all conviction, while the worst
Are full of passionate intensity.

Surely some revelation is at hand;
Surely the Second Coming is at hand.
The Second Coming! Hardly are those words out
When a vast image out of Spiritus Mundi
Troubles my sight: somewhere in sands of the desert
A shape with lion body and the head of a man,
A gaze blank and pitiless as the sun,
Is moving its slow thighs, while all about it
Reel shadows of the indignant desert birds.
The darkness drops again; but now I know
That twenty centuries of stony sleep
Were vexed to nightmare by a rocking cradle,
And what rough beast, its hour come round at last,
Slouches towards Bethlehem to be born?

WB Yeats
 
That might explain why it's taking so long, it's pointed in the wrong direction.

That'll teach 'em to start such projects without bothering to invent sat nav first.

Twenty centuries and it still hasn't got there.

In fact if my memory of plate tectonics is anywhere near accurate it'll most likely be further away than when it started.
 
Hi! :emoji_warning::emoji_warning::emoji_warning::emoji_fearful:

We have a BIG PROBLEM
in the latest communications between the Norwegian Cochrane review regarding:

"define minimal important clinical differences (MICD) for commonly used outcome measures." (see file 13May2019)

see file 24May2019 and 27May2019 (e-mail com: 13may-doknr.12, 24may, 27may, (28may, 29may, not shown edit: shown); doknr.11/13)

They can NOT define MICD in a allready written review for use to effect size. It is like starting a new research study within.

This is what happend when PACE and ie Stubhaug alter outcome and cut-offs

pace-2011_lancet_nye-rammebetingelser-i-helsesektoren-med-gullkantet-avtaler.jpg
1

There is no consensus and there is little research-data done in ME/CFS.

BIG S*IT problem.

Need someone to alert @Andy @Tom Kindlon @Jonathan Edwards ++

Regards
Marit

Do not overlook the fine :emoji_candy: Tovey 24may ;-)
 

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Marit @memhj said:
Do not overlook the fine :emoji_candy: Tovey 24may ;-)
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Where did these emails come from? I'm glad Tovey is not bending, but I wonder if they authors are expecting his replacement to be a push-over?

I agree "minimal important clinical differences" cannot be defined as something so trivial and more importantly, clinical differences need to be relevant to patients (which requires a study in itself), they can't merely be defined as the smallest possible change on a questionnaire as these authors seem to want.

David Tovey recommended:

I am very grateful for the work you have done to revise this document and have no wish to cause you further distress, and therefore I suggest that the communications run along these lines:

‘Cochrane and the review author team have been unable to agree on revisions to the review, and therefore, with regret, it will now be withdrawn from the Cochrane Database of Systematic Reviews. The Cochrane authors are not in agreement with this decision. The review authors are now free to publish this revised version elsewhere. In the future, Cochrane may decide to commission a replication of this review or a separate review on this topic.’ I also think that in any public comments it may be important and useful to stress that this is not equivalent to a retraction of the review.

For our part, we will need to inform some journalists of the decision, and of course the news will be portrayed on social media, but my intention is to manage this in as quiet and respectful a manner as possible. I am also copying in Claire Glenton as the Head of Cochrane Norway.
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Yet the review is still there!?!
 
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From Atle's email to David Tovey 29 May 2019:
Now, to the most difficult problem, issue Number 1: The grading of the fatigue-outcome that we have concluded is based on moderate certainty evidence, but you claim should be downgraded to“low”. You state that there are three reasons for downgrading. Let me go through each of them:
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......
  • Lack of blinding: Yes, we have downgraded for this.

  • Heterogeneity: No, we have not downgraded for this, and we have explained why in the
    text: The (statistical) heterogeneity is due to a single study. When that study is excluded, the heterogeneity disappears. However, the effect size remains above the standard thresholdfor considering a SMD effect size “moderate” also after excluding the “outlier study”. Sincewe found no good reasons for excluding the study other than it being an outlier, we viewed it methodologically flawed to exclude it. In our view, disregarding the study because thedata “don’t fit” would be a flawed, data-driven decision.

  • Imprecision: ...
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Lack of blinding - I would have thought that unblinded studies with subjective endpoints would result in a bigger downgrade than they seem to have made. I'd be looking for a category of evidence of 'close to useless', given this is evaluating the evidence for an operationalised treatment, not just exploratory studies.

Heterogeneity - I'm struggling with the logic here. So one study had a different result to the rest. (Am I right in thinking that that was the only one done by a team that was not invested in finding that exercise did help CFS? Jason? Going only by vague memory). So, if they take that study out, then, super, no heterogeneity. So no need to downgrade the certainty rating for heterogeneity. Except that the authors rightly feel that there is no reason to exclude the study that had the different result. So that study is included.

Umm... So doesn't that mean the studies thought worthy of inclusion do have heterogeneous results then? I which case, the certainty rating should be downgraded?

Edit: See Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19 - Michiel Tack has explained that there was one study with very positive results; excluding that still resulted in an overall positive result.


I haven't been paying close attention to this story, so sorry if I have needlessly repeated something.
 
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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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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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Trish said:
Fascinating correspondence. I wonder what has been happening in the month since these emails were sent.
Surely by now the review should have been either published or withdrawn.
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New Editor- in - Chief has been in place since June 1st? Am I right? What is her view? ( Hope I’ve remembered correctly that it is a ‘she’. Don’t remember reading anything about her).
 
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