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

The correspondence I received was back in March.

 

Right! It wasn't in the review itself it was simply in the library, listed as a relevant paper for CFS.

 

Uhhhh... that and avoiding deterioration, with a direct corollary that the treatment itself should not either, as well as many other types of benefits. Increasing activity is the tail end of treatments, a whole lot usually happens on the way there. He speaks of later stages but increasing activity is the whole treatment that he has been promoting, both the very first and the very last steps, on a disease he fundamentally misunderstands, no less.

Of course things are usually different in psychiatry, but then that seems to be the consequence of Wessely's bizarre thinking of psychiatry as some kind of king of medicine (which has nothing to do whatsoever with it being his chosen profession, of course).

By that logic steroid treatment to prevent damage in MS would not be advised, as it would not accomplish the ultimate aim of increasing activity.

Wessely's thinking is sometimes disturbingly simplistic, right at the edge of aphorisms.

 

It would be well worth the money but I don't know who could spare the funds for this.

Of course this should normally be a required step in the psychosocial alternative model of medicine, if it were a legitimate area of research. Some of the studies don't even involve genuine control arms but there would be value in pushing for the use of quack arms, where observing a similar treatment effect would reveal that the outcome is nothing but a questionnaire effect, brought about, ironically, by psychosocial effects (like breaking the crushing isolation for a little while).

But I wouldn't trust anyone involved in this ideology to actually make an honest comparison. We know how PACE compared an ersatz version of pacing and basically phoned it in with the standard medical care "control" arm. It would take independent researchers working with full transparency and serious oversight.

I hereby propose the DUCK trial, where quack treatments arms are compared alongside, well, the usual quack arms of CBT, GET, ACT, mindfulness, yoga, whatever. In a legitimate effort, I posit that analysis would show similar outcomes in all treatment arms, statistically indistinguishable.

Which is why it will never happen. Serious researchers would simply never waste funds for such nonsense and I'm sure quack researchers understand that it would reveal their BS. Maybe skeptics, though? Then again I would not trust them to do it but surely they would be up to funding it if it were run by independent people with no stake in the outcome. Surely. Holding my breath... holding... hol... h... .

 

Don't make me count to 3!

1.... 2... 2.5... 2.66.... 2.75... 2.88... 2.881.... 2.882...

 

Oh but if they tried this, then the homeopathists would claim high success:
“Homeopathy found to be every bit as successful as the highly acclaimed CBT and GET.”

And see what I did there - my imaginary headline gave CBT & GET an extra boost by asserting they are strong themselves. You can be sure these trial outcomes would not be painted the way they ought to be!

 

The bitter irony is that a treatment which cured or just managed ME would lead to more activity as a direct effect.

We are all desperate to do more; it is feeling ill and PEM which stops us, take that away and we could shower, shop, cook, walk the 30 minutes a day they want of us.

 

Forum member and blogger @Marit @memhj has written a blog post with an overview of the chronology of the correspondence between Cochrane and the Norwegian Institute of Public Health

På ME-fronten: Cochrane vs Larun; Folkehelseinstituttet har bevisst villedet og tilbakeholdt informasjon
google translation: Cochrane vs. Larun; the Norwegian Institute of Public Health has deliberately misled and withhold information

I hope the google translation makes some sense?

 

Everytime I remind myself of the history I get more appalled by it. So frustrating.

 

Also- good points about the missing documents. I don't really know how the Norwegian system works, but it seems something odd has happened there.

 

Not surprised but this should be a big deal, if laws and regulations matter anyway. Governments are supposed to make decisions based on real data and justify why those decisions were settled on. By extension all government bodies are subject to this obligation of, in a nutshell, not making stuff up just because they like it.

Good test of whether this whole psychosocial alternative medicine woo can operate above the law, or if it is subject to the same laws and obligations as the rest of us. Because this adds a whole layer of responsibility, when decisions are made despite contradictory information and they lead to recorded harm. It's likely that people died because of this. No doubt thousands suffer needlessly. And there is little doubt that the contradictory information was well-documented and made available to the institute, meaning they ignored specific warnings, rejecting reality and substituting their own.

Basically, they did harm and ignored the rights of a vulnerable population. Does that even count? Did it ever? Or is is just a suggestion that can be ignored when it targets a despised population?

edit: post was getting too long, breaking up parts

 

Thank you @Marit @memhj ! That must have taken a huge effort to put together

So useful to have the timeline, documents and references in the public domain.

It's mainly Laruns emails/documents missing, if I'm not mistaken...?

 

Reading the included document and this is a remarkable quote:

The authors acknowledge that there is selective reporting but don't believe that it's a problem. When you are acknowledging that you did selective reporting you have already lost the plot and truly have nowhere else to go.

This is so absurdly indefensible and shows how thoroughly broken the whole ideology is, that it is so devoid of reliable evidence that selective reporting of subjective questionnaire trial data is seen as acceptable and normal enough to just casually admit to it. And somehow still manage to be outraged that the barest minimum response in the circumstances, the only reasonable one, is followed.

There are deep, deep problems within the culture of medicine. It should be self-evident that relying on the scientific method is critical and not a simple matter of opinion. And here we see off-hand comments basically dismissing the need to even bother with it at all, simply because, in their words, they "believe" that it is not a problem.

And the whole problem even manages to square itself by being a fictitious narrative itself about unhelpful beliefs. Unhelpful beliefs about unhelpful beliefs. You couldn't make this up if you wanted to. This plot point would be laughed at if it were made in a movie.

 

Notable, from Tovey, May 24 2019:

The emails are a fascinating read and just about the most damning they could possibly be. It is inexplicable that, with all those flaws, Cochrane should have published this review in the first place and the matter needs to move beyond correcting the mistake but that there is a pressing need to investigate how work of such poor quality slipped through in the first place, and was even allowed to remain published for so long while those flaws were thoroughly picked apart.

However this is puzzling, same email:

Why? It clearly warrants it, no doubt that it was an egregious mistake given the circumstances. Why is Cochrane walking on eggshells over this? The review sucked and should be considered malpractice. Why go to such lengths to pretend otherwise? Eating their cake and having it too? Yes, it sucked, but no one should be blamed for it, case closed. Not a chance.

 

Just read the e-mails and i am thoroughly flabbergasted. As someone who has multiple bad crashes due to gradual exercise, it really infuriates me that they are trying to push trough the review unchanged having removed all objective outcomes that shows there is no effect.

This sentence from Atle to Laren at the start of the correspondence i found especially worrying: "I believe and trust that you will find this version of the review publishable, and I look forward to hearing from you".

Yeah? Your systematic review is so bad u have to kiss his ass to save face? Sorry but lobbying has no place coming from public health institutions when its about research assessment. Who are these people..

 

“

”@Trish

Thanks for doing this Trish. It needed doing in order to get a clear picture.
When Tovey indicated last Oct that the review would be withdrawn, and then there was the outcry from Establishment figures, it was clear that this was going to be another fight. And it seems that ‘eminence’ not ‘evidence’ has won.
What IS happening now? Nothing good it feels.

 

Thanks for the overview @Marit @memhj !

It was a bit hard to follow in the google translate version, but If I understand correctly the problem is (1) that none of the documents became available until February 1, 2019 although they date back many months before that (2) that some documents seem to be missing and aren't even registered.

I assume you suspect there should have been documents for these contacts, as they are mentioned in later emails. For example, Ottersen writes on 16/10/2018 to Tovey:

"With regard to process, Dr. Larun received your letter on July 31, and she responded August 13 that she agreed to follow up on the recommendations for revision from Dr. Livingstone. On September 7, you contacted the authors to inform that the review was about to be withdrawn because the authors had failed to follow up on the criticisms."
​

I suppose September 7 could have simply been a telephone contact. Regarding the other two, isn't it possible that there was personal information in the emails that made them inappropriate to be made public? Larun said that her co-author was indisposed due to the family illness so perhaps these emails go into this (for example the authors describing the illness and family situation to explain why they needed more time to answer the criticism).

Perhaps it is an option to ask why these documents were not provided, whether they were due to personal information in the emails or other reasons.

Many thanks for your efforts (and those of the other Norwegians), in obtaining this information!

 

I just cant stop laughing, thinking of what was given as a kind of gift at the end of the LP course. The instructor called the thing a anchor, a thing we could place at a appropriate place, and something that should always remind us of LP, of the the method.

It was certainly not deliberate, some kind of bad joke, but it’s the beautiful irony, that each of us were given a little plastic duck (bathtub style). Quack, quack.

 

I missed that - from the Norwegian? I think I might have skimmed through these too quickly.

 

I'm pretty sure the documents should still be listed, with a reference to the law used to keep parts from the public. It would be the personal information itself, not the document that could be withheld from the public. At least that's my understanding, with a bit wobbly ME-brain...

http://eid.difi.no/nb/hvorfor-er-noen-saker-og-dokument-unntatt-offentligheten