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

They are not running away, they are expanding their efforts even as we are pushing back.

 

They do run away from genuine science-based criticism! All their efforts are with a view to achieving that.

 

They just lie and hide their malfeasance as best they can

 

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.

 

I am not sure. We have some excellent answers in the pipeline, see how that goes first.

 

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

 

That Gundersen's publishing in the media shows some influence. I don't think that anyone sees him as a serious figure, but picking him apart may still be valuable.

 

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.

 

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.

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).

 

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.

 

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.)

 

I think the Google translate version is OK for now. If I produce a reply that seems to have misunderstood some of what he says we can sort that out.

 

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.

 

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.

 

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

 

In a dicussion on Gundersens FB, i made the point that PACE authors have used more than £ 100 000 for not giving out raw data. I have read it somewhere, but don’t remember where. Can anybody help me?

Edit : found it