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

[Cheshire]

There is so much to say about this piece. Unbelievably wrong on so many points...

They claim CBT for ME is not aimed at a cure, which is in total contradiction with the intent of the PACE team.

Their more dishonest implicit claim is that CBT for ME equates CBT for cancer. That makes any person critical of the PACE look like a dumb and mean person stubbornly against any psychological help for PwME.

Their critic of the diagnostic criteria is so messed up, that I don't know where to start...

Some opponents claim that it is possible to use existing case definition to predict treatment response, and they often shorten debates by circular arguments like stating that people who are diagnosed with ME and report improvement following CBT or GET must have been misdiagnosed with ME in the first place. There is actually no evidence that existing case criteria for CFS/ME are suitable for this purpose (Brurberg et al, 2014), and the PACE trial contributes important data on the relationship between case definitions and the effectiveness of CBT and GET. Some critics devaluate the findings in PACE because patients were recruited according to the Oxford criteria, forgetting that PACE participants were stratified according to much narrower case definitions similar to the CDC-1994 and London ME criteria (White et al, 2011). The effectiveness of CBT and GET was consistent no matter what case criteria that were used (White et al, 2011).

Where he [keith Geraghty] sees dishonesty and fraud, we see a transparent, well-conducted and rigorous trial.

Hahaha

Whether individual patients find the expected efficacy to be useful, will to some extent, be a matter of personal preferences.

Apart from the random use of commas, this looks like the output from a random word generator (and makes about as much sense).

"expected efficacy"? What's that, then? Is it efficacy or not? Or is it hypothetical efficacy, that BPS speciality?

"useful"? "a matter of personal preferences [sic]"? What is he saying here? That the treatment is efficacious but in ways that a sick person might not find useful? Like, er, not making them any less sick? Or making them more sick?

This sentence made me groan too. It is utter nonsense. Do they imply that in fact, the efficacy of a trial is a matter of personal judgment?

 

[BurnA]

With the opportunity for legitimate scientists to post a rebuttal right beneath the article this whole thing might be an own goal.

Having people read the article at present and then reading the comments can't be good for their cause.

I get the impression this blog just likes controversy and website views.

 

[slysaint]

Yes, they are getting into the debate without examining the facts. CBT as applied elsewhere, such as cancer, is a very different therapy.

Succinctly expressed in one of the comments:

"CBT may be helpful for people by changing negative thoughts around being ill and help them cope that way.
But CBT for PACE was not doing that. It was basically an illness aversion therapy that told people if they changed their illness beliefs they will recover."

Nicely put

 

[user9876]

Their more dishonest implicit claim is that CBT for ME equates CBT for cancer. That makes any person critical of the PACE look like a dumb and mean person stubbornly against any psychological help for PwME.

Too me it shows a lack of understanding which should concern anyone funding them or employing them as researchers. CBT is a delivery mechanism for changing beliefs. The beliefs they are changing is a critical part of any treatment. When a researcher in the area who doesn't understand this or is willing to gloss over it then it suggests they don't have a grasp of their own subject.

 

[Valentijn]

They claim CBT for ME is not aimed at a cure, which is in total contradiction with the intent of the PACE team.

Yes, there's a few points where the author was either lying through his teeth or displaying an impressive degree of ignorance. How does someone like that end up authoring reviews?

I get the impression this blog just likes controversy and website views.

And they're willing to publish some pretty nasty things in the process.

 

[trishrhymes]

The article is so poor I don't know whether to laugh or cry. I'm not surprised it wasn't published.

I don't know what sort or size of readership the mental elf has, but I've taken the time to pick out specific statements in the article and quote and then refute them in 3 separate posts. I hope others will do the same. There are some good comments there already, so far as I can see all critical of the article. I wonder whether anyone will defend them.

Who knows whether we will have any effect. We can only try.

 

[BurnA]

New blog by Coyne on this.

https://www.coyneoftherealm.com/blo...-s-nomination-of-reviewers-for-his-manuscript

 

[BurnA]

It is not often in my experience that an author misrepresents the facts about his/her recommended reviewers in such an audacious and palpable manner. If you lie these days, exposure is only a few clicks away. Norway is a small country, a country that I dearly love, not a place I normally associate with cheats and rogues. That impression just took a nose-dive. You have wasted a lot of my time and you won’t be given a 3rd or 4th chance. You have already blown it.

I recommend that you reflect on the ethics and professionalism of your actions and the potentially serious consequences for your professional career. Better luck next time! But please don’t try it on again with this journal.

 

[Londinium]

The comments under the article are perfect: clear, concise, unemotive and factual. It receives the Fisking it deserves.

 

[Invisible Woman]

The comments under the article are perfect: clear, concise, unemotive and factual. It receives the Fisking it deserves.

Was just coming back from reading the comments to say that

Perhaps the Mental Elf was doing us a favour?

 

[trishrhymes]

How on earth did Brurberg come to be a Cochrane reviewer? He clearly has no understanding of the flaws in PACE. What an idiot.

 

[Cheshire]

How on earth did Brurberg come to be a Cochrane reviewer? He clearly has no understanding of the flaws in PACE. What an idiot.

That's why he became a reviewer...

 

[trishrhymes]

Kjetil Gundro Brurberg

Kjetil is a senior researcher at the Norwegian Institute of Public Health and an associate professor at Western Norway University of Applied Sciences. He is a medical physicist with a PhD in tumour physiology and medical imaging, and is now working to promote evidence-based practice by supporting guideline processes, by giving lectures and by authoring systematic reviews. He has co-authored several systematic reviews about chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), e.g. a systematic review about case criteria and a traditional Cochrane review about the efficacy of exercise therapy for patients. He is also co-authoring an upcoming Cochrane review about exercise therapy based on individual patient data, a work that has given detailed insight into the existing evidence.

This is the author description given on the Mental Elf article. Am I missing something here. How does a medical physicist come to be doing a Cochrane review of ME research? Does he actually know what ME is? If he is 'working to promote evidence based practice' he sure has a lot to learn.

 

[dangermouse]

Seems there will be a few more abstracts for NICE to glance over.

 

[slysaint]

Unless of course it agrees with what we say; in which case we'll use it and tell the authors welcome to the club"

 

[AndyPR]

I hope Kjetil is now feeling better that his commentary was published somewhere, though I guess that must be tempered by the experience of having patients point out all the flaws in his writing - though as he's a card-carrying BPS acolyte he'll just claim that all the comments are evidence of anti-science.

This comment I particularly liked, as it's suggestive that the commenter is not a patient but just wants decent science to be done.

This is the second time that a site that is supposed to expose bad science publishes a defense of what has been widely criticised as bad science – and one written by someone who is hugely biased at that. I am puzzled as to why.

I am heartened by the well-reasoned and well-researched critique in the comments but we shouldn’t even have to have this conversation. The PACE trial has been widely criticised by people who understand the subject, and the demands for its retraction should be welcomed. People with ME/CFS deserve so much better than being told that if they just stop thinking they have an illness, they will stop being ill. If we did this to people with literally any other long term condition without any attempt to address the underlying pathology, there’d be a public outcry.

 

[Sean]

Yes, there's a few points where the author was either lying through his teeth or displaying an impressive degree of ignorance. How does someone like that end up authoring reviews?

Speaks extremely poorly to the quality control at Cochrane.

 

[Sean]

And, thank you, David Marks and the JHP journal for standing up to this obnoxious drivel.

Marks' full letter of rejection, and Brurberg's petulant reply, are about halfway down this post by Coyne:

https://www.coyneoftherealm.com/blo...-s-nomination-of-reviewers-for-his-manuscript

 

[Cheshire]

5th point of another very good comment:

5. “Peer-review and debate are important constituents of science, but we are concerned that tendentious criticism and allegations as set forth by Dr. Geraghty (2016) are counterproductive and may discourage further research. Patients who could benefit from these treatment strategies, and actually want to try, may also lose the opportunity because they lose the courage to try or because health personnel avoid offering them.”

Undermining a critical voice, by implying that his critique would be responsible for either discouraging researchers from the field or patients from trying the treatment is gaslighting. Science requires robust critique. If the PACE trial is unable to withstand such critical analysis, then this suggests that it is highly flawed (an opinion to which many adhere). Contrary to the author’s assertion that patients may miss out on this treatment as a result of Dr Geraghty’s critique, the issue is quite the opposite. Currently, in many places in the world, GET and CBT are the ONLY treatments offered to patients. Patients who reject them, don’t respond to them or become worse as a result of them are viewed as difficult, considered to be overly identified with the “sick role” and thought to not want to recover. In other words, their lack of recovery or adverse reaction to the treatments is blamed on the patient, rather than on a flawed model and inappropriate treatments.

[...]

Their hypothesis must incorporate new evidence. They hypothesise that the condition is caused by deconditioning and activity avoidance. For example, should the Rituximab Phase III trial be successful, how will they account for it within their framework? How would a b-cell depleter remedy deconditioning and false illness beliefs? Whilst the author might feel that Dr Geraghty’s critique was unnecessarily harsh, the PACE authors and other proponents of the psychosocial model have greater foes to face as the biomedical evidence progresses and continues to mount. These new findings must be addressed within the model and, if it is unable to account for the evidence, the model should be rejected.

 

[RogerBlack]

5th point of another very good comment:

Furthering that quote on b-cell depleters.
The Phase II open-label rituximab trial must be (from their perspectives) one of the most effective behavioural therapies around.
They managed to convince patients they were not ill, and many returned to normal life.
I wonder - considered purely as a behavioural modification - rituximab would be more cost effective using the same measures of health as CBT has been claimed to be.