Norway and prof. Gundersen: PACE-debate in newspaper Morgenbladet

Jonathan Edwards said:
Indeed it seems to be fine for Dr Gundersen to insult people. Perhaps that is not 'ad hominem' because he insults people en masse, but it is clearly the same. Why on earth does Dr Gundersen think he has the right to be rude to patients? He accuses highly intelligent patient scientists who have constructed cogent critiques of being 'activists'. I pointed out that he seems to be something of an activist himself. In the UK this is known as a pot/kettle situation. If Dr Gundersen wants to debate then he might explain why he is defending a trial that fails on the most basic methodology - subjective outcomes without blinding? Or if plain English is easier then: if you tell people to say they are better they will say they are better (to avoid hassle). In clinical pharmacology this trial would be a non-starter. It is effectively alternative medicine, which Dr Gundersen is supposed to be a stalwart critic of.
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If you'd like to write a reply to Gundersen in Morgenbladet ( https://en.wikipedia.org/wiki/Morgenbladet ), please do contact me. We've done translation business together before, with success - even though Landmark and Gundersen themselves wouldn't admit so. Landmark is a lost cause, but I actually think it is possible to reason with Gundersen. And if he can't be reasoned with, I am sure that many readers would get how bizarre his point of view is if a professor pointed it out. He can't bash you like he bashes patients. He has written a book about alternative medicine and pseudo treatments. It is absurd that he praises PACE, while attacking patients. He tries to tell a story where the participants in the debate are honest researchers versus awful patient activists. He forgets to mention the tens or hundreds of academics who have raised serious questions regarding the PACE methodology and design.
 
Professor Kristian Gundersen is NOT a medical doctor, MD. He is NOT and has NOT Project to investigate research into ME. Still he refuse to debate all aspects and the extent of misconduct and questionable research practices. A question about research integrity, whom Gundersen is failing. To the norwegians ME-patiens he is a nobody. He can NOT influence, like VB Wyller has and still do or Henrik Vogt (use same tactics). I hope you pwME herin spot the difereance...

som links. use translater

Ukas Uviten 21apr2016: - Sterke pasientgrupper må ikke få tvinge gjennom ensidig forskning, mener forsker Kristian Gundersen https://totoneimbehl.wordpress.com/2016/04/23/ukas-uviten-21apr2016-sterke-pasientgrupper/

Ukas Uviten 21apr2016: Den akademiske debatten med Kristian Gundersen er offisielt over! https://totoneimbehl.wordpress.com/2016/04/24/uviten-21apr2016-debatt-offisielt-over/

Professor Kristian Gundersen - Section for Physiology and Cell Biology, Department of Biosciences. http://www.mn.uio.no/ibv/english/people/aca/kgunder/index.html

Hva om pasientene har rett, Kristian Gundersen? https://debortgjemte.com/2016/04/26/hva-om-pasientene-har-rett-kristian-gundersen/

This is academic nonsence and waste of time and energy folks!

...and do your homework on FOI
 
I think responding again to Dr Gundersen may be a productive exercise if it has public exposure. It is always useful to rehearse the story again in a news context. Moreover, his recent posting raises some issues that have not yet been debated.

The intriguing question is why he should be so staunchly supporting Dr Brurberg. OK Dr Brurberg is Norwegian, but the real Norwegian heroes in ME research are the epidemiologists who found a double incidence peak and the Bergen researchers who did a well designed trial. Maybe Dr Gundersen has a rosy-tinted view of Cochrane because of his interest in quackery. I am afraid the rosiness has very much worn off for me in that quarter.

@deleder2k, I think I could produce a comment piece. Perhaps we should PM.
 
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I am very wary of allowing the likes of Dr Gundersen to engage freely and directly here as regular member. It is easy for experienced debaters, especially ones in a position of authority (no matter how unjustified), to distort and derail a debate if they so wish, and he has form on that.

What I do think might be worthwhile is having a separate area of the forum specifically for people like him to post and engage, without being able to derail the rest of the forum. We are entitled to a safe space.

It is a tricky issue, whatever choice we make.
 
Sean said:
without being able to derail the rest of the forum.
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How would he be able to do that any more than any other member? As has been said before, he would be subject to the same forum rules as everyone else. The rules aren't perfect, they never will be, but the mod team, in applying those rules, have done a good job in preventing the forum from being derailed so far.

Sean said:
We are entitled to a safe space.
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Currently, Dr Gundersen could, if he so desired, sign up using a pseudonym and an easily obtained anonymous email account and we'd be none the wiser, as could any other BPS supporter. In fact, the chances are that this has already happened, in my opinion, as we know it happened with PR. The safe space is created through application of our forum rules by our mod team, not through an attempt to restrict "undesirables" to a small area of the forum.
 
I think it would be great if @Jonathan Edwards considered giving a reply. Would you prefer a "washed up" translation of his text, or is the google translation sufficient?

I agree with @Marit @memhj that most ME-patients doesn't take him that seriously, but many academics are reading the newspaper Morgenbladet and this is where a lot of debates on research and academia happens. The journalists are also quite skilled in research and complex themes. Morgenbladet is a weekly newspaper known for thorough, in depth articles. I SO wish they're getting curious on this debate and that some of the journalists would like to have a go on an article about PACE.

The fact that Gundersen is a professor, and the fact that those who have responded so far are "mere" patients, gives prof. Gundersen the upper hand. To have another professor answering, someone who knows both the patient community and the research (Gundersen knows neither) can hopefully add to the debate that it is far from "just" patients who have problems with the PACE-trial.

Edit To Add: Us patients have discussed the PACE-trial for years, but it is only very recently that others in Norway are starting to notice there might be an issue with a study called PACE. So it is important to get the story straight from the beginning. There are several people with personal interest in distorting the debate as the biopsychosocial milieu (prof. Wyller) and the Norwegians who sat in the Cochrane review group with PACE-researchers (Brurberg and Larun).
 
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Sean said:
We are entitled to a safe space.
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Hi, @Sean, I had the same response as you initially, but as @Andy points out, there is nothing to stop anyone signing up anyway, and most of us use forum names, so anything we say in our 'safe' areas is not attached to our real names, giving us a measure of privacy. And anyone joining with intent to undermine or upset patients would quickly fall foul of the rules and be removed. It is our moderation policies and good moderators that keep us safe, not trying to keep people out who disagree with us.

And on further thought it could actually be a good thing for some of our 'opponents' to see the members only area. It would give them a window into a world of struggle and suffering that they may have done their best to close their eyes to, especially if they actually only treated patients with fatigue related to stress or depression, and haven't had any contact with more severely affected ME sufferers.

They would see a world of intelligent people with a wide range of interests and sense of humour doing their best to cope with a very difficult life with considerable physical disability, not the bunch of lazy whingers they might imagine.
 
You might remember Kjetil Brurberg wrote a contribution to the special issue on PACE from the Journal of Health Psychology. It got refused so he published a complaint about the process at Mental Elf together with Signe Flottorp (researcher) and Aase Aamland (GP) - all known for a strong biopsychosocial approach to ME.

Brurberg at the Mental Elf: A PACE-gate or an editorial without perspectives?

I'd be surprised if prof. Gundersen is aware of the positionings in the ME-field, that also the Mental Elf has contributed earlier in the debate as defenders of PACE and how controversial the Cochrane review where Brurberg participated is. As long as something is published from an institution he trusts, it is gospel - until proven otherwise. Therefore he wants more research on CBT and GET and why not throw in a study on LP as well.
 
Sean said:
We are entitled to a safe space.
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No, I think not. If a 'safe space' is protection from ideas one does not like that is precisely what nobody should have and what the BPS crowd want for themselves.

There is absolutely no need to fear PACE apologists. The members of S4ME can knock them into a cocked hat in terms of debate. As I have said before, this forum, and indeed, another one before it, has a sharpness of debate you rarely see in academia itself. It would be a bit like the Harlem Globetrotters worrying about playing a game against the Aberystwyth girls school B team. (Sorry for the sexist jest.)
 
Jonathan Edwards said:
No, I think not. If a 'safe space' is protection from ideas one does not like that is precisely what nobody should have and what the BPS crowd want for themselves.

There is absolutely no need to fear PACE apologists.
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I agree. A 'safe space' is what the BPS crowd have managed to create for themselves in the media, which they can access far more easily than patients.

The frustrating thing for people knowledgeable about PACE has been the impossibility of forcing the PACE crew to engage in debate, rather than have them give a non-response to a question and then run away. Simon Wessely's article on the Mental Elf was a case in point. He spouted a load of irrelevance about PACE, failed to answer the existing key criticisms, and completely ignored all those points when they were raised in the comments section. He didn't respond to any comments at all.

Spout nonsense. Run away. Rinse, repeat. We've seen that pattern a hundred times with the BPS people.

Debate! Bring it on.
 
Kalliope said:
You might remember Kjetil Brurberg wrote a contribution to the special issue on PACE from the Journal of Health Psychology.
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Yes, I was thinking that the 'theme' of my response would be why not cheer the real heroes of Norwegian ME research, in epidemiology and immunology rather than a man who does a sort of pseudo-journalistic job of summarising research in a field he has no experience of. After all Norway leads the world in ME research so why not say so.
 
Patients are rightfully upset that a few researchers that are fooling themselves with unblinded studies have derailed efforts to find answers.

Unblinded studies might be the norm in the field of psychological medicine but as patient I feel no obligation to pretend that these wouldn't lead to placebo effects creating the illusion of treatment efficacy. The emperor is naked and I have no problem pointing this out.

And I think that what PACE authors have done is bordering on criminal activity. There clearly is willful ignorance about the problems that undermine the claims about CBT/GET being effective, there is willful ignorance about adverse reactions to GET, and there clearly are several large financial conflicts of interest.
 
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Alvin said:
They are not using science, they are perverting it. Doctoring trials to get the result you want is not science, nor is it ethical.
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Perhaps I was unclear, apologies if I was. My meaning was simply that they successfully took over and occupied the science debate (and policy making too of course) so they need to be challenged on that front too.

edit for clarity
 
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