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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Dear Mr Gunderson, Have you read the actual research publication. I shall be very happy to send you a copy.
 
Barry said:
:yuck: Wash you mouth out with soap and water :D:D:D. [Said in the spirit of sincerely meant friendly banter].
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Yeah that was a bit.. provocative? (or something) :laugh::laugh: That comment is just something to do with whether the forum is just for people who agree. I'm struggling a with words and writing today and threw it in.

I've got bar soap and liquid soap - which do you suggest?
 
Skycloud said:
Yeah that was a bit.. provocative? (or something) :laugh::laugh: That comment is just something to do with whether the forum is just for people who agree. I'm struggling a with words and writing today and threw it in.

I've got bar soap and liquid soap - which do you suggest?
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I fully retract my suggestion! Had it done as a kid and not very nice.
 
People like Gundersen likes to set and controls the debate. And are used to get their way in things. Think of themselves as superior. The text proves it too.
He started a topic/debate and used ME as an example. But then he was unexpectedly used as an example in another topic, “Strong opinions and little knowledge about patients” which Kalliope refers to in the start. (And i wrote) So maybe he wants to set an example, react so hard, so that we should wish we never had written.
Well. This is not the end of it.
In fact this is a unique opportunity to get more honest information about pace and Cochrane published. This is a good thing, as it turns out.
 
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In an article in 2016 Gundersen wrote this about the PACE trial, and the ongoing dispute about the data sheets:

The claim for access to the data is legitimate and should be met in one way or another, but one can ask if such massive actions are really motivated in the search of truth. It is known that the tobacco industry and climate skeptics have used endless freedom of information requests to harass scientists.
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Later on he wrote:

The PACE researchers themselves respond well in scientific terms, but they unwittingly engage in a hostile discussion of their own integrity.

If strong patient groups want society to accept almost anything of bad research that supports the hypotheses they like (For example the pensioners in Oslo's), while demanding the perfect conclusion from researchers who conclude differently (PACE), one will get a skewed picture of reality.
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The translation was done in a hurry, so it might not be 100% accurate, but I guess it says enough. Nevertheless, I do hope that Dr. Gundersen would join this forum for an open and honest debate. I know that he is concerned about free research. It is my understanding that he does thinks that a proportion of us have a physiological disease, and he has said that the research into the metabolic system looks interesting. He is an expert in muscles. It would be fantastic if he would actually use that knowledge on helping ME patients.

Source in Norwegian: https://www.aftenposten.no/viten/i/P3d3R/Uviten-Pasientene-og-deres-forskere
 
Alvin said:
I do always look at the big picture but i also know giving a reality denier ammunition is a bad idea. I'm not saying keep the forum a secret but inviting someone who looks for reasons to smear us is like playing with fire.
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It's a tricky one, because if a forum that was founded on debating the science (good or bad) that prevailing ME treatments are based on, is not prepared to engage with those who hold entrenched positions that we strongly disagree with ... that surely comes across as hypocritical on our part? It's what we accuse those people of.
 
Barry said:
It's a tricky one, because if a forum that was founded on debating the science (good or bad) that prevailing ME treatments are based on, is not prepared to engage with those who hold entrenched positions that we strongly disagree with ... that surely comes across as hypocritical on our part? It's what we accuse those people of.
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Speaking semi-officially here. Debate on any subject related to ME, conducted within the rules of the forum, is to be encouraged, no matter who it is with. In the unlikely event Simon Wesseley or Esther Crawley wanted to join to defend themselves, we would encourage that, however they would be subject to the forum rules in the same way as every other member.
 
Andy said:
Speaking semi-officially here. Debate on any subject related to ME, conducted within the rules of the forum, is to be encouraged, no matter who it is with. In the unlikely event Simon Wesseley or Esther Crawley wanted to join to defend themselves, we would encourage that, however they would be subject to the forum rules in the same way as every other member.
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And I think inevitably the moderators might end up busier than usual :rolleyes: because although it would at times be incredibly difficult to not get a bit personal, it would be vital we stayed objectively on the science, and were seen to be so, else our cause and credibility would be seriously undermined. Moderation decisions, would have to be totally impartial. I know that you and the rest of our management/moderation team do not need telling this, and also most - maybe all - of our membership. But I just felt it worth clarifying that absolutely no one should expect to be treated differently. And as I write this I realise that in the heat of the moment in such a debate, I might easily fall into the trap of saying too much what I felt ... though I would try very hard not to.

Edit: I realise in your post you in effect said this anyway, but I just felt like wittering on about it a bit ;).
 
Thank you for giving us a bit more context about Dr Gunderson @deleder2k. Welcome to the forum!

I really hope this doesn't just fizzle out - Dr Gunderson has said publicly that he is willing to discuss with @Jonathan Edwards. There is a platform here. Others can join in.


Alvin said:
We won't win on facts, we will win with a repeatable disease mechanism and shaming the reality deniers into submission which uses facts but also by fighting on their level whether its with emotion, highlighting consequences or even the courts.
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A discussion on the science is also on their level.
 
Both me And Trude wrote about the flaws of PACE, the changed outcome so that people could be sick enough to enter and at the same time recovered, and other main things.

Gundersen says in his answer that he disagree. With no explanation at all.
Is there a word for that? Reject science because he doesn’t like it?
I am a little baffled about that it is possible to reject facts with “I disagree”
 
Andy said:
Speaking semi-officially here. Debate on any subject related to ME, conducted within the rules of the forum, is to be encouraged, no matter who it is with. In the unlikely event Simon Wesseley or Esther Crawley wanted to join to defend themselves, we would encourage that, however they would be subject to the forum rules in the same way as every other member.
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I would also hope that in any such debate any moves to shift the "debate" towards the emotive and away from the science, would be brought up short. Science-based debate, not emotively driven power point presentation. e.g. My grandfather was a war hero etc.
 
Barry said:
although it would at times be incredibly difficult to not get a bit personal, it would be vital we stayed objectively on the science, and were seen to be so, else our cause and credibility would be seriously undermined.
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Absolutely. But I suspect it would not be too hard to stick to the science if these people actually did so themselves.
 
Skycloud said:
I suppose I'm questioning whether S4ME is meant to be a cosy echo chamber.
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Yesterday i would have said no. Today i don't say yes but i am the one with the different view with lots of opposition.

climate skeptics have used endless freedom of information requests to harass scientists.
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So we argue facts and use ethics but we are compared to profit driven reality deniers. Interesting how we are the powerless "powerful" bad guys...

Barry said:
It's a tricky one, because if a forum that was founded on debating the science (good or bad) that prevailing ME treatments are based on, is not prepared to engage with those who hold entrenched positions that we strongly disagree with ... that surely comes across as hypocritical on our part? It's what we accuse those people of.
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In principle i agree, but this is dealing with people who peddle in reality denial, lies, smears and fraud. I hope one day society reaches a point where lies and reality denial would cause any professional to be immediately booted out of their professional body and prosecuted if they cause harm. These people use their authority to lock people up and force dangerous treatments on them backstopped by their insistence on denying reality and pretending they are helping their victims.

Andy said:
Speaking semi-officially here. Debate on any subject related to ME, conducted within the rules of the forum, is to be encouraged, no matter who it is with. In the unlikely event Simon Wesseley or Esther Crawley wanted to join to defend themselves, we would encourage that, however they would be subject to the forum rules in the same way as every other member.
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You do realize they would use our responses to their posts as evidence against us. I'm not saying they should be not be allowed but i am saying they do not act in good faith, and bad faith can get you further then good faith today. That needs to change.

Skycloud said:
A discussion on the science is also on their level.
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They are not using science, they are perverting it. Doctoring trials to get the result you want is not science, nor is it ethical.

Jonathan Edwards said:
Absolutely. But I suspect it would not be too hard to stick to the science if these people actually did so themselves.
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Agreed.
They have the power to harm us yet we are the "villains" who would welcome them with open arms which they would use against us.


I know my view is insanely unpopular but i don't welcome with open arms those who want to harm me, i don't try to harm them in return but i do keep in mind they are dangerous and protect my interests accordingly (and unlike them ethically).
 
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Andy said:
You do realise that we could use their responses as evidence against them?
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How far has that gotten us?
This is a huge power imbalance and in our case energy imbalance.
In the end we will win, once we get a disease mechanism they are toast but i will be impressed if we get reparations for the people they have harmed. If i were a parent of one of those kidnapped by the state and harmed children i would be using the courts to fight for damages and have their medical licenses, yet the chances of a parent winning are dismal, despite the child now unable to function (hard to deny physical evidence).
There was recently a thread on the other place about someone facing having their child taken away soon, all the work we have done debunking PACE and so on is having no effect in preventing it.
 
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