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

[emmaj]

Just thought I'd mention that some CMRC members also contribute to the Mental Elf blog.

https://you.38degrees.org.uk/petitions/me-association-to-leave-the-cmrc

 

[Solstice]

Kjetil G. Brurberg
12 hours
I was invited by the Journal of Health Psychology to comment on their ongoing PACE debate. Realizing that some people might view my role in a Cochrane review based on individual patient data as a potential conflict of interest (COI), I consulted the editor on these issues before accepting the invitation. Shortly thereafter, the editor confirmed that he did not see my potential COI a big problem, and that he still wanted me to write the commentary article. The same COI, however, suddenly became a major issue when I submitted the commentary and my opinions were made known. What happened?

Dr Geraghty seems to operate with a dynamic definition of bias implying that other rules apply to people who share his views. The observation that most JHP commentators agree with the points raised in his PACE-GATE publication is as expected when taking into account that all authors who have been supportive to the PACE-trials have been collectively refused.

Poor little fella ;( .

 

[trishrhymes]

I've just gone back and looked at the comments put up on the Mental Elf since I last looked and noticed that the author of the article has responded - but by writing a petulant and defensive comment in response to James Coyne who linked to his blog about the peer reviews.

Here's what he says:

''
Kjetil G. Brurberg

The claim that I have nominated reviewers with known conflicts of interest is simply not true. When asked to nominate reviewers to my own work, I find it important to suggest people who holds the needed distance to me and my work. As the distance increases, it becomes increasingly impossible to have a full overview of peoples’ social life during the last decade. I did not know that one of the suggested reviewers had been sitting next to one of the PACE-authors at a conference dinner, but I would not consider this as a serious conflict of interest.

It should not be regarded as dishonest for authors or reviewers to have an opinion on disputed matters as the PACE trial.

You state in your blog: “It is important to consider, in addition, your own conflicts of interest as a person who worked for the Cochrane Collaboration in the analysis of individual data on exercise therapy for CFS including data from the PACE Trial….”

Despite being aware of my “conflicts of interest”, Journal of Health Psychology invited me to write a commentary on Geraghty’s editorial on the PACE trial. You did not declare however that JHP has intellectual conflicts of interests regarding the PACE trial, by only accepting reviewers representing the critics of the PACE trial, and rejecting papers from authors not sharing your views on the PACE trial.

If I had known, I would not have accepted the invitation.''

............................................................................................


He has not responded to any of the comments pointing out errors of substance in his article. l couldn't resist putting up a note about this, which awaits moderation. I'll copy it here in case it disappears:



''Dear Dr Brurberg,

I see you have responded to one of the comments here. I hope this means you are reading all the other comments carefully.

I do hope, as a scientist seeking to promote better quality research you will read all the comments as well as all the articles published in JHP critical of PACE and use your good scientific brain to examine objectively all the points raised.

It would be useful for you also to gain a better understanding of ME/CFS if you would read widely in the biomedical literature rather than just the the psychological literature.

This would be a good place to start, especially the summary of the biomedical evidence on page 3, but I think taking the time to read the whole document would be enlightening.
http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

It is clear from your article that you do not understand the differences in the CBT done in PACE and in cancer care.

You also do not appear to be aware of the biomedical evidence showing problems with energy metabolism that make GET harmful in ME that make some of your statements inaccurate.

I do hope you will concentrate on the substance of the comments made here, rather than simply seeing them as criticisms and becoming defensive.

The fact that your article was rejected by JHP should, to a good scientist, flag up warnings that your article contains serious inaccuracies, rather than assuming that it is because your article is critical of Keith Geraghty’s article.

A good scientist should have the humility to learn and to admit when they have got it wrong. I am sure you aspire to be a good scientist. I fear you have been taken in by the PACE and other psychological researchers who have their own agenda.

I address the same comments to the editors of Mental Elf who chose to publish this article.''

 

[Luther Blissett]

This is interesting, perhaps you'd like to show the clear similarities in a bit more detail?

I can't find the book at the moment

But one thing that strikes me as an explanation about why the CBT proponents minimize symptoms and emphasize 'pushing through' symptoms is the following questionnaire which is similar if not identical to the one in my manual:

Now for an complex anxiety phobia, you fill this form in, and begin to work on the thoughts and behaviours associated with these sensations. You are then encouraged to put yourself in situations where you get these symptoms, increasing your exposure to them. You are constantly reassured that these thoughts and feelings are nothing to be worried about. That they are a part of learned or adaptive behaviour you have and are part of the fight or flight response.

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.

In the anxiety disorder, you get these sensations because of your conscious and unconscious cognitions, and related behaviours like hyperventilation, adrenalin rush, etc. The basis of CBT for a phobia is how to learn to ignore/manage these sensations while being exposed to an activity that produces them.

This involves exploring how your thinking and behaviour contributes to them, and how things like the fatigue they cause are not really dangerous, even though they feel like they are. This is because the cause of the fatigue is a natural part of what happens after a fight or flight response.

At its worse, my phobia would have scored much higher on this questionnaire than my ME.

There was no need for further biological testing for things like my racing heart because it was caused by a natural response. In fact further testing would have heightened my anxiety and possibly caused harm to my recovery. (sound familiar to any theories you know of?)

During the course of treatment, you fill in the same and related questionnaires, and see the progression. Improvement in subjective answers to questionnaires are seen as acceptable because the illness is subjective.

Because I have agoraphobia, physical activity was/is exhausting, (especially outside the home) and caused physical symptoms. It was a cause of chronic fatigue and being mostly bedbound. However, it was important to keep producing the symptoms until they did not affect my thoughts and behaviour and impact on my life.

With ME, I have similar physical symptoms, and behaviours, for obvious reasons, but not the cognitions.

If you look at ME through the lens of 'abnormal cognitions/behaviours' and an 'Exercise Avoidance' model notice how the body sensations appear perfectly normal and harmless, and a subjective questionnaire at the end of treatment with an improvement in scores is a success and well on the road to 'recovery'. A proposed improvement of 10% per week would be good progress, and achievable. The body sensations would be desirable, needed for the therapy to work, and a sign that the patient is complying with treatment. GET is the form of exposure to exercise that reduces the illness.

If you look at ME through the lens of biology/medicine, the body sensations are worrying because they show an underlying problem, with serious abnormalities. They would be a source of harm to the patient and should be minimized as much as possible. GET is the form of exposure to exercise that exacerbates the illness.

(edited to add source of questionnaire) http://web.sas.upenn.edu/dchamb/questionnaires/

 

[Luther Blissett]

As the distance increases, it becomes increasingly impossible to have a full overview of peoples’ social life during the last decade

I did not know that one of the suggested reviewers had been sitting next to one of the PACE-authors at a conference dinner

I often find that i forget who my friends are and who was at what wedding

I bet it happens to @Keith Geraghty all the time too.

 

[Alvin2]

Fraud has to be proved, even if its strongly suspected. Pseudoscience is more easily demonstrable.

I agree, but this creates a moral hazard, financial fraud is prosecuted but medical fraud is not pursued becasue proving it is hard so we don't try.

To prove fraud you need a whistleblower or documented evidence that will stand up in court. Most cases of scientific fraud, even when people are indirectly harmed, have no legal consequences. The consequences tend to be social.

Its fraud to steal money through false pretenses but not fraud to write a fraudulent medical paper upon which medical treatment will be based? If medical ethics had teeth (and consequences) then fraud could be proven, in this case the judiciary could be used to set precedent, as i understand it they lied to their patients about risks, knowingly exposed them to treatment that could harm them (but as long as they don't believe it its somehow ethical?) then doctored their results in plain sight. This is fraud.

To take people to court over alleged harm from fraud requires direct and documented harms. Its really hard to do, and it could be expected that the person taking it to court might have to pay costs on a failed case.

Someone once said only the rich have the protection of the law...

Pseudoscientific movements operate via social and political means. Identifying something as pseudoscience also does not require proving intent or harms.

I agree but this is not good enough

Scientific fraud, as opposed to criminal fraud, is easier to prove. It also has no legal consequences in most cases, though anyone who paid for the research might have a civil case. The usual consequences are social ... loss of prestige, inability to publish or get grants, and for doctors it can include the loss of their medical licence.

In theory your correct, in this case the journal seems to believe the lies so they are protecting the lies and facing no consequences for doing so.

I'm not disagreeing with what your saying, i'm just saying this is a huge moral hazard that is big exploited to harm us. They clearly broke medical ethics and produced a paper designed to not discover reality but rewritten to "prove" their alternative fact ideology. They broke their Hippocratic oath and the law is protecting them instead of sanctioning them for it.

 

[jimells]

The list of pharmaceutical companies successfully prosecuted for fraud and patient harm (including death) is very, very long. How is PACE any different - aside from having disability insurers and government agencies as protectors?

 

[alex3619]

the law is protecting them

In the UK, as is the case in a few other countries including Australia, doctors are immune under law from a wide range of civil prosecutions.

What is happening is in a grey area in the law, in which fairness and justice have taken second place to maintaining the status quo.

Criminal prosecution is much more difficult. It should happen. It might require sweeping law reforms before it happens in any way resembling justice.

Its wrong. It needs changing.

 

[RogerBlack]

In the UK, as is the case in a few other countries including Australia, doctors are immune under law from a wide range of civil prosecutions.

My understanding is that in the UK, not all doctors are covered by the NHS indemnity scheme - specifically GPs are not.
For those that are, you can still take action, but it will be defended against and funded not by the doctors medical insurance, but the NHS trust they are employed by.

However, in the climate around the UK medical establishment, lots of 'experts' on GET/CBT lack of harm will be trotted out which you would have to fight, making it a considerably more difficult option.

 

[Snowdrop]

Hi @Alvin2

I think there should be strong sanctions in place in cases of medical fraud. This might be of interest: http://www.bmj.com/campaign/research-fraud-and-misconduct

It turns out that the person arguing for strong sanctions in the case of fraud is co-director of research at sick kids hospital in Toronto. Perhaps he'd be interested to hear the stories of children being sectioned in the UK.

 

[alex3619]

My understanding is that in the UK, not all doctors are covered by the NHS indemnity scheme - specifically GPs are not.
For those that are, you can still take action, but it will be defended against and funded not by the doctors medical insurance, but the NHS trust they are employed by.

However, in the climate around the UK medical establishment, lots of 'experts' on GET/CBT lack of harm will be trotted out which you would have to fight, making it a considerably more difficult option.

Some years ago laws were passed in a number of countries that limit liability from doctors. Even if you take them to court, unless those laws have been repealed you have limited options. In Australia these laws take the form of limiting what doctors can be sued for, and how much. Its very limited. I think the UK had even more extensive protections than here. All this happened most of a decade ago. Someone would need to check the specifics of such laws for the UK unless they have been repealed.

 

[dangermouse]

I have difficulty understanding why the so called caring profession(s) target ME as they do, and why others facilitate them.

 

[RogerBlack]

I have difficulty understanding why the so called caring profession(s) target ME as they do, and why others facilitate them.

Because it is key to the careers of a core group of ~50 academics, and ~1000 CBT/GET therapists.
And because most of the rest haven't investigated CFS closely, as they haven't investigated any of hundreds of diseases and conditions outside their speciality closely.

At this point (in the UK), it is legally required for CFS clinics to in most cases offer CBT/GET.

There isn't a massive explicit conspiracy IMO. Just bad selection of who is asked when a question comes up, leading to the ship continuing to sail on blithely ignoring new data.

 

[Jonathan Edwards]

Some years ago laws were passed in a number of countries that limit liability from doctors. Even if you take them to court, unless those laws have been repealed you have limited options. In Australia these laws take the form of limiting what doctors can be sued for, and how much. Its very limited. I think the UK had even more extensive protections than here. All this happened most of a decade ago. Someone would need to check the specifics of such laws for the UK unless they have been repealed.

I am to aware of this Alex. As far as I know as a UK doctor I was always subject to the law in relation to negligence or fraud just the same as anyone else. I think it very unlikely that any laws have been passed in the last 20 years that limit doctors' liability in the UK. The main change is that blanket crown indemnity for accidental harm has been whittled away. If I made a culpable error I would have had to defend myself with the help of my medical defence insurance association. If an error occurred that was not due to my culpability but indicated a failing of care then my hospital would be liable to provide compensation.

I have never heard of such protections. Can you give a source?

 

[Tom Kindlon]

Robert Courtney & I wrote detailed critiques of the Cochrane review of exercise therapy for CFS by Kjetil Gundro Brurberg and others.

The comments can be found quickly here (p.113-133)
https://www.dropbox.com/s/koehut6iw2bm9v5/Larun_et_al-2017-The_Cochrane_Library.pdf?dl=0

Many points apply to the piece on the National Elf Service website.
The responses by the authors, posted by Lillebeth Larun, were unsatisfactory.

 

[alex3619]

I have never heard of such protections. Can you give a source?

This goes back about a decade. In Australia there was a crisis where the insurance costs were so high they risked going out of business. Hmmm, I think it was our Prime Minister Howard ... which means more than a decade ago. So the maximum payouts were capped on legal claims. I will try to find a source. I was concerned at the time that similar schemes were underway in a number of countries, including the UK. This only applies to non-criminal negligence so far as I am aware. It will not stop someone suing a doctor, but limits the allowed claims in a suit.

 

[Large Donner]

The list of pharmaceutical companies successfully prosecuted for fraud and patient harm (including death) is very, very long. How is PACE any different - aside from having disability insurers and government agencies as protectors?

Dont pharmaceutical companies usually just get a corporate fine without individuals being affected then just put it done to the cost of doing business and go ahead and do the same shit over and over again?

 

[Tom Kindlon]

https://twitter.com/i/web/status/887996755773665281

Anyone know which comments by Mental Elf are being referred to?

It might be useful for somebody to write a piece, though I am not volunteering myself.

 

[alex3619]

On limits to legal actions against doctors, I found a detailed legal discussion of this in Australia. From what I have found so far the claimed ligation crisis in the UK is ongoing, with further limitations being discussed on claims as of this year, though not yet implemented.

Of particular relevance to claims made with respect to damage from CBT/GET, it is established in Australia (and there may have been recent changes in the UK I have yet to track down) that a reasonable defense is that the doctor applied treatments accepted by his/her peers.

So if GET is approved by NICE, and harm is done from doing it, the doctor may have a defense. Now in Australia there are several exceptions to this, one of which is that the treatment is irrational. Its not clear that such exemptions operate in the UK, but I am currently looking at the Bolam test.

Discussion of these issues for Australia can be found in this paper: http://www.austlii.edu.au/au/journals/JlALawTA/2011/6.pdf

The issue here is that that statutory limitations were imposed on common law determinations. Such limitations affect what can be claimed for, and how much can be paid in compensation. This was previously dealt with under common law.

There appear to have been changes affecting the UK Bolam test (from 1957) and I am still looking at that.

If the Bolam test or something like it still holds, the mere fact that NICE recommends GET may mean that in most cases doctors have a defense against any claim of negligence unless there are further complicating factors.

The key phrases to look for appear to be statutory caps, and statutory limitations.

 

[Snowdrop]

But then there is this: http://www.law.qmul.ac.uk/research/impact/class_actions/

I know it' not discussing an already present law but it may be useful to consider and of course it was from QMUL so just had to add.