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

[Andy]

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

Just about to reply to this and now see that you've found it. For anyone else interested, the blogger John the Jack discovered that Queen Mary University of London, the employer of Peter White at that time, spent just short of £250k fighting to prevent the release of the PACE data, https://johnthejack.com/2016/06/29/using-public-money-to-keep-publicly-funded-data-from-the-public/

 

[Alvin]

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.

I agree and disagree, relegating people to certain sections only is not conducive to treating them with dignity yet we don't need trolls or people spouting obvious lies either. So i agree its tricky in a sense. Being ethical is more complicated then being unethical, so i'm glad you mentioned your thoughts because we should figure out how to handle things the best way possible since we aim to be more ethical then our opponents.

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 agree, this is about the best way to look at this that we have available

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.

I disagree, people who post painful personal information being picked apart and showing up in court decisions and analyzed by strangers. In fact i would like to see members only area restricted to longer term vetted members, it would not be perfect (though i wish it could) and trolls/PACErs could still get in if they tried hard and faked many posts (proving what they are about) but we have a members only area for a reason, otherwise everything should be public.

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.

This is why i was disagreeing earlier, they don't see us as equals with a disability, they look down on us. Seeing our personal information would not change their minds, it would give them more ammunition. I know many will disagree with this, but my opinion on this comes from things beyond this forum.

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.

I agree, they are peddling pseudoscience repackaged as science and dismissing inconvenient facts. And when confronted they vilify us by accusing us of making threats instead of acknowledging their malfeasance (an example of how they think of us, throwing us under the bus by harmful treatment foisting and vilifying us, two for one )

 

[Barry]

I disagree, people who post painful personal information being picked apart and showing up in court decisions and analyzed by strangers. In fact i would like to see members only area restricted to longer term vetted members, it would not be perfect (though i wish it could) and trolls/PACErs could still get in if they tried hard and faked many posts (proving what they are about) but we have a members only area for a reason, otherwise everything should be public.

I think it is the thin end of a very big wedge if we decide membership on whether we like/agree with people or not. It exhibits significant bias, and bias is what we strive against all the time. Let's not give those people just cause to accuse us of bias, no matter what kind of bias.

 

[Barry]

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.

Exactly what I've been pondering, but not formulated well enough to get the words down. Thank you Jonathan. Agree 100%.

 

[Alvin]

I think it is the thin end of a very big wedge if we decide membership on whether we like/agree with people or not. It exhibits significant bias, and bias is what we strive against all the time.

I agree

Let's not give those people just cause to accuse us of bias, no matter what kind of bias.

They already do and will continue to accuse us anyways.
That said we should not aim to become like them because its not who we are and the facts are on our side.

 

[Barry]

They already do and will continue to accuse us anyways.

Of course they do, but as I said, let's not give them just cause.

 

[benji]

Morgenbladet didn’t fancy what I wrote, they thinks there is nothing unfair with Gundersen text. So when I was critical, they meant I was unjust. Not happy about Morgenbladet.

 

[Luther Blissett]

Morgenbladet didn’t fancy what I wrote, they thinks there is nothing unfair with Gundersen text. So when I was critical, they meant I was unjust. Not happy about Morgenbladet.

Sorry to hear that. On the plus side, I use experiences like this to inform how trustworthy a media source is. If it is untrustworthy or unreliable on something I know about, why should I trust it in areas I don't know about?

 

[benji]

There is development (I quarreled a bit with Morgenbladet). But I don’t like to write so much here, since everybody can read. Probably we can report with an answer in Morgenbladet here soon.

 

[Kalliope]

New answer to Gundersen from The Norwegian ME Association.

ME-syke fortjener å bli lyttet til og respektert
google translation: ME-patients deserved to be listened to and respected

It is the treatment of ME patients in many places in the world that is a "horror example", not ME patients themselves, as Kristian Gundersen writes in a post in Morgenbladet February 21 . For many years, ME patients have been exposed to treatments that make them worse, while being called "activists" and "bullies" when they point this out, and ascribed motives and opinions they do not have. It is high time that we listen to the patients' arguments and stop making this enemy image. We are at a time when the view of CFS/ME is changing rapidly and no one is served with a polarized situation.

 

[Kalliope]

Another reply to prof. Gundersen. For various reasons it wasn't published in the newspaper Morgenbladet, so was posted on a blog instead.

Professor Gundersen forsvarer dårlig forskning
google translation: Professor Gundersen defends poor research