The Mental Elf: A PACE-gate or an editorial without perspectives? Kjetil Gundro Brurberg

[Kalliope]

There are multiple major flaws in PACE, a few of which should invalidate the entire project on their own, and even more that put it in severe doubt.

And that's why I can't fathom how PACE-researchers were allowed to be in the Cochrane review group.

 

[slysaint]

More from the same anonymous reviewer:
Anonymous reviewer
3 hours
You covered the same ground as others, and it was decided we’d try and add to the debate, not let people repeat the same thing over and over. Reviewers have to be fair. We were not censoring anyone; just trying to make a contribution to the debate. Something a bit different to move things along. Your paper didn’t.

You appear to be stuck to a narrative that has major flaws. If people get ill after minimal exertion, then increasing the amount of activity will make them more ill. GET is therefore not appropriate for classic ME or the concept of CFS in the USA.

It’s only relevant for people with chronic fatigue due to stress or another psychological problem.
Why is it that some people can’t accept that? Why this obsession with chronic fatigue due to lack of activity, especially when Dutch and American trials have shown no increases in activity to explain any improvement. As a psychologist, this obsession/group think fascinates me. NB no longer involved with the journal.

Well, I'm glad someone finally said it.

 

[dangermouse]

You appear to be stuck to a narrative that has major flaws. If people get ill after minimal exertion, then increasing the amount of activity will make them more ill. GET is therefore not appropriate for classic ME or the concept of CFS in the USA.

 

[Snow Leopard]

Sometimes the Coyne rhetoric just goes one step further than I'm comfortable with.

Yes, it is important to have tact. It is generally more successful to have fewer, stronger criticisms than many weaker criticisms mixed in.

 

[Tom Kindlon]

I'm trying to post comments on the site but am having difficulty. Is anyone else?

I tried with a different browser (Microsoft Edge) and it worked. I had been trying Google Chrome.

 

[Esther12]

Personally, I think that the whole peer-review process is a bit of a joke, at least when it comes to a topic like CFS.

It's important patients are able to read the views of this co-author of the Cochrane review for exercise therapy. This review has a huge impact on how we are treated and we should be able to see for ourselves how misguided and ill-informed he is.

IMO, at least when it comes to commentaries on a topic like CFS: Peer review should be a voluntary process authors pursue for themselves in order to try to improve the quality of their work, rather than something imposed by the journal to restrict what can be published. Also, there were problems with some of the anti-PACE commentaries too, so I think that there could be some merit to concern that peer-review was one-sided (although the Petrie and Weinmann piece was rubbish, and they published that).

I'd like to see poor commentaries published and then picked apart (especially when they're from individuals in positions of authority), but I know I can be more pro-debate than many in medicine.

If the journal doesn't want to waste space on a commentary they can put it on-line only?

 

[Londinium]

Yes, it is important to have tact. It is generally more successful to have fewer, stronger criticisms than many weaker criticisms mixed in.

Yep, can't agree enough. We know that if even just one commentator is overly aggressive or angry, that comment will be the one that is seized upon as evidence that those criticising BPS approaches are simply unhinged. And besides, the BPS 'science' is so flawed that it's possible to eviscerate their arguments in an entirely dispassionate manner.

 

[Barry53]

Does make you wonder what the criteria are for being deemed an "expert" in ME/CFS? Seems precious little to do with any fundamental knowledge or understanding, and much to do with these psychiatrists' own false illness beliefs and their ability to pull the wool over people's eyes.

 

[Cheshire]

Does make you wonder what the criteria are for being deemed an "expert" in ME/CFS? Seems precious little to do with any fundamental knowledge or understanding, and much to do with these psychiatrists' own false illness beliefs and their abitlity to pull the wool over people's eyes.

In the psychiatric model, there's not much knowledge needed to understand the mechanism of CFS. There are patients who think they are sick, they stop exercising, hence they feel fatigued. The solution is to make them engage gradualy into doing more.
Congratulations, you're an expert.

 

[Snowdrop]

I'm not that keen on James Coyne's method of attack.

With regard to the comments on reviewer COI
On reading here and some of JC's tweets it just seems that the focus of attack is in the wrong place to be of benefit and it's just a tad strident for no good reason.
It's even possible as others here mentioned that Brurberg's been duped to see what he's supposed to see; a piece of research that 'looks good' on paper and by people with a stellar reputation vs a rabble of no nothing patients complaining. If you're the kind of person who thinks most people ignore science in favour of belief than it becomes easy to fool some scientists who hold this bias.

I don't know what approach is best to engage Brurberg. You would think providing unassailable facts would work with a scientist but scientists are people too and it seems that they can often be using rationality, a calm demeanor, and (unproven, unfounded) "facts" to argue an emotional position without even being aware.

Right now it just sounds like a pissing contest.

 

[RogerBlack]

With regard to the comments on reviewer COI
On reading here and some of JC's tweets it just seems that the focus of attack is in the wrong place to be of benefit and it's just a tad strident for no good reason.
It's even possible as others here mentioned that he's been duped to see what he's supposed to see; a piece of research that 'looks good' on paper and by people with a stellar reputation vs a rabble of no nothing patients complaining.

Err - this seems precisely opposite to what much of JCs complaints are, with respect to PACE. I'm not sure what you mean here.

Unless you're criticising his other work.
And looking at many of the tweets, they seem to mostly have merit.

There is lots of crap talked about mental health by ostensibly 'for the patients' groups, amplifying poor research with little merit.

For example, research conflating 'hearing voices' in the sense of people who hear the voice of their loved one in amongst a crowd, and know it's not really them, with the people who hear imaginary voices, and are seriously worried or compelled to action by them.

Some then go on to argue that 'mental illness is a social construct' and diagnoses have little to no value. When really studying these two groups as if they are one is as ridiculous as lumping someone who wants to lose a couple of pounds for the summer and people weighing 400kg.

Is his tone a little strident at times - perhaps. But the other side has plenty of strident voices as well.

 

[BurnA]

Is his tone a little strident at times - perhaps. But the other side has plenty of strident voices as well.

I am happy for Coyne to continue being himself and taking a no nonsense approach.

I think there is plenty of room for that style of approach in our efforts.

I don't agree with everything he says or does but on balance I feel he is a worthwhile asset.

 

[Snowdrop]

Definitely never said never be strident -- I said he was doing so -- on the issue of responding to COI -- it seemed to me to not be the central issue and therefore the statement strident for no good reason which by that I meant not the issue that really matters here with regard to what is wrong with Brurberg's article in mental elf. There are times to be strident and times to not it's a matter of judging the situation and no one gets it right all the time. Having said that I think JC's default might not be to go for catching the fly with honey.

JC's comments were not without merit it's a matter of choosing what to focus on in commenting. It could very well be that I am loosing the thread here. I am finding that I have trouble holding on to the whole of what's been said.

As for your mental health comment I have no idea what you are referencing and thus what point you are responding to.

 

[Barry53]

You would think providing unassailable facts would work with a scientist ...

Unless you are a scientist driven by unassailable prejudice.

 

[Stewart]

Definitely never said never be strident -- I said he was doing so -- on the issue of responding to COI -- it seemed to me to not be the central issue and therefore the statement strident for no good reason which by that I meant not the issue that really matters here with regard to what is wrong with Brurberg's article in mental elf. There are times to be strident and times to not it's a matter of judging the situation and no one gets it right all the time. Having said that I think JC's default might not be to go for catching the fly with honey.

JC's comments were not without merit it's a matter of choosing what to focus on in commenting.

Broadly speaking, I agree with you Snowdrop, and I'm glad that the vast majority of the commentators have engaged with the (lack of) substance of Brurberg's blogpost. However - as I already said upthread - I think Brurberg did need to be called out for what looks to be a pretty amateurish attempt to smear the JHP, so I'm glad Coyne and Marks have skewered him for it.

Coyne has been blogging quite a bit in recent months about how the PACE team seem to constantly get away with bending the normal rules of good scientific practice and he seems to be getting increasingly frustrated that so many people (like PLOS and Cochrane) are prepared to let them go on doing it rather than stand up to them. It's unsurprising (and completely in character) that when he saw a slight opening he'd go straight for the jugular... He's also hinted that a *lot* of pressure has been brought to bear against the JHP behind the scenes, so it's also understandable that he'd want to vigorously defend David Marks against Brurberg's attack.

It's even possible as others here mentioned that he's been duped to see what he's supposed to see; a piece of research that 'looks good' on paper and by people with a stellar reputation vs a rabble of no nothing patients complaining. If you're the kind of person who thinks most people ignore science in favour of belief than it becomes easy to fool some scientists who hold this bias..

You might well be right about this - he might well have originally just been overly trusting of a group of well-respected academics and researchers. The problem is that through his initial willingness to misrepresent the reasons his article was rejected, his subsequent misrepresentations of the rejection email from the JHP (despite his claim in his response to Coyne, his commentary was not rejected because he didn't know that "one of the suggested reviewers had been sitting next to one of the PACE-authors at a conference dinner") and his continued failure to respond to any of the commentators who have engaged critically with his blogpost, he gives the impression of being a man who's already taken the decision to go all-in behind Team PACE.

It would be nice to think that we could engage with him, get him to look critically at the facts and reconsider - but I suspect the very fact that he tried to use this commentary to discredit the JHP means that he's not interested in discussing the evidence with an open mind.

 

[alex3619]

Does make you wonder what the criteria are for being deemed an "expert" in ME/CFS?

[Satire] "I said I was, my friends agreed, ergo I am."

 

[Sean]

Does make you wonder what the criteria are for being deemed an "expert" in ME/CFS?

Joining the cult.

 

[JaimeS]

...late to the party.

Anyone know more about this statement?

Only that it's impossible. They didn't record anything re: heart rate or lactate, or if they did, they've been keeping it a secret. No objective data was published re: PACE.

What's this story about lactate by the way? PACE never measured lactate. Is this something they made up on the spot after hearing about Fluge & Mella's metabolic study?

Or something this particular author heard one of the authors assert: "sure, we measured lactate. We didn't publish it because... er, it wasn't the subject of the study. Why did we measure it, since it wasn't the subject of the study? Erm..."

Now if you have ME, notice how you will score highly in these sensations, but for completely different reasons than if you have them as a result of your anxiety disorder.

But note: "how afraid you are of these feelings" is the question being asked. I really worry about not being able to breathe, sometimes, but the rest don't "worry" me, I am used to them but I find them very uncomfortable. That's not the same as fear or anxiety regarding them. I would score pretty low on this.

Then, I would be diagnosed with La Belle Indifference!

(Wow, that link is to a pretty darned recent article from the British Journal of Psychiatry... it's train-wreck comical / horrifying to read.)

And no, lack of blinding is not irrelevant, just because blinding may have been impractical doesn't make the huge bias introduced magically go away, it's like arguing that it's irreverent that this cake used salt instead of sugar because that is all that we had in the cupboard.

Well said!

You appear to be stuck to a narrative that has major flaws. If people get ill after minimal exertion, then increasing the amount of activity will make them more ill. GET is therefore not appropriate for classic ME or the concept of CFS in the USA.

It’s only relevant for people with chronic fatigue due to stress or another psychological problem.
Why is it that some people can’t accept that? Why this obsession with chronic fatigue due to lack of activity, especially when Dutch and American trials have shown no increases in activity to explain any improvement. As a psychologist, this obsession/group think fascinates me.

*drops to one knee and proposes marriage to this comment*

 

[Valentijn]

An excellent comment from @Keith Laws :

Keith Laws
2 days ago
To return briefly to the underpinning ‘science’ for a moment… Dr Brurberg says that “A large number of trials have consistently shown that cognitive behaviour therapy (CBT) and graded exercise therapy (GET) may be supportive for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) (Larun et al, 2016; Price et al, 2008).”
As the most recent – and therefore, influential – meta-analysis, I wanted to make a few brief comments on the Cochrane meta-analysis of CBT by Price et al …and Dr Brurberg’s reference to it

I was left asking myself… what is meant by the phrases: “large number” (of trials), ‘consistently’ and ‘supportive’?
Assuming that some answers might be found in Price et al., it is worth taking a look. The key headline message in the Price et al abstract states that CBT significantly reduces fatigue scores at post-treatment. The analysis consisted of 6 trials and it is the largest number of trials assessing any outcome presented by Price et al…so, I guess 6 is a ‘large number’

Are the findings consistent? Well, 2 trials found a significant CBT effect, but 4 were nonsignificant – are they consistent?….more consistently nonsignificant than significant?

In the broader context of the review, Price et al presented 44 separate (meta) analyses of various outcomes from 15 trials. Of those 44, only 9 analyses show better outcome for CBT than control (including 5 analyses that involved just a single study) – so, the majority of comparisons do not support CBT efficacy – In other words, approximately 1 in 5 of their analyses suggest CBT may be ‘supportive’

At the finer level of individual effect sizes, Price et al present 128 effect sizes – of which 37 are significant for CBT, while 91 are non-significant – so fewer than 30% of individual CBT effect sizes are significant

So, wherever we look – the majority of analyses, outcomes and effect sizes reported by Price et al do not obviously or clearly (in my view) point to CBT being supportive in CFS

Another issue concerns bias….of the 15 studies examined by Price et al, only 1/15 can be deemed ‘free of selective reporting’, only 3 are blind and none of the 15 are deemed free from ‘other bias’.

We might also note that the CBT for CFS trials assessed by Price et al are massively underpowered to detect the effects that they do propose as significant. For the main analysis on whether CBT reduces fatigue, the median power to detect true effects is remarkably low at .27 – although Price et al did not deem it necessary to remark upon poor study quality or the tiny sample sizes in their abstract or the Plain Language Summary (aimed at a wider audience) of their Cochrane review

Finally, Dr Brurberg raises the following interesting point
“It is worth noting that the effects of CBT and GET in CFS/ME are similar to those seen among patients with other serious diseases where fatigue is a prominent symptom, e.g. cancer (Furmaniak et al, 2016) and multiple sclerosis (Heine et al, 2015; van den Akker et al, 2016). The benefit of CBT and GET does not imply that we can conclude that cancer, multiple sclerosis or CFS/ME occur for psychological reasons. It is difficult to understand why the benefit of CBT and exercise in patients with cancer and multiple sclerosis seems widely accepted, whereas the usefulness of CBT and GET for patients with CFS/ME remains controversial.”

It seems quite commonplace amongst CBT advocates to make such a argument – it centres on what I would call ‘nominal analogy’ assumption
if CBT impacts symptom X (fatigue) in disorder A (Cancer), then it will also impact symptom X (fatigue) in disorder B (CFS/ME). This argument is based on the assumption that identifying symptom X in both ‘disorders’ means they are identifying the same ‘thing’ … the symptom is abstracted and decontextualised …and hence it often follows, that the same treatment is applicable and possibly equally efficacious
It only takes a moments reflection to see that argument holds no (logical) water….….For example, CBT may reduce the symptoms of depression in those diagnosed with depression; however, other evidence shows that CBT does not reduce the symptoms of depression in Bipolar Depression (see Jauhar, McKenna & Laws 2016). If we turn back to the current case – Dr Brurberg cites the Cochrane review as evidence of CBT efficacy- even here it fails to show that CBT reduces depressive symptoms in CFS/ME… calling something a dog does not make it bark

 

[Luther Blissett]

Does make you wonder what the criteria are for being deemed an "expert" in ME/CFS?

[Satire] "I said I was, my friends agreed, ergo I am."

I do not think, therefore I am.
Non cogito ergo sum