Norwegian professor in biology supportive of PACE

[Marky90]

He tweeted about this thread as an example of how abusive ME-patients can beI get the impression he wants to be some kind of self-declared martyr, instead of answering to the legitimate criticism of the PACE-trial

 

[Kati]

Dear prof Gundersen. Welcome to the forums!

we are not terrorists. We are patients sick with a horrible disease that keeps us from our lives and livelihood. We are simply truth seekers.

Here you can peruse the different threads, you can review the science, you can even jump in and add your point of view. Seemingly you know about biology. Perhaps you have a thing or 2 to share. In general patients do not like to hear that what afflicts them is all in their heads. This kind of propaganda has occured in the past with patients with epilepsy, stomach ulcers, parkinson's and multiple sclerosis. Millions of us have this disease which started with an infectious process. And curiously enough, survivors of Ebola and likely some with Zika are afflicted with similar symptoms. No one claims that their symptoms is a fiction of their imagination.

Become part of the solution, not the problem.


Sincerely, Kati

 

[TiredSam]

I wonder if Gundersen has actually looked at the details on this. It sounds like he hasn't.

First rule of psychobabbling - avoid getting into the detail at all costs. If you face detailed criticism, remain vague.

A scientist interested in an open debate would have gone through Prof. Edwards' letter point by point, replying to each substantive issue raised. This non-response by Prof. Gundersen speaks volumes.

 

[Bob]

...critics do not modify their criticism through debate, they just repeat it...

That sounds very much like what Gundersen is doing; i.e. attacking critics of PACE but not engaging with the legitimate concerns or substantive issues. There has been rigorous debate but ultimately the published criticisms of the PACE trial cannot be, and should not be, overlooked. It would be a disservice to science, medicine and patients to allow weak science and false claims to go unchallenged.

Patients aren't the ones misrepresenting the outcomes of the PACE trial in the published literature and media, so I'm not sure why patients are being criticised. I'd like to know if Gundersen believes that it is legitimate scientific conduct to exaggerate results and e.g. promote claims that there was a 30% recovery rate when in fact only 11-15% of participants responded to treatment, and if it's OK to claim that there was a long-term benefit from treatment when in fact there was no difference between trial arms at long-term follow-up.

I wonder if Gundersen has embarrassed himself and backed himself into a corner and doesn't know how to back down gracefully.

 

[Jonathan Edwards]

It is intriguing that Dr Gundersen should produce such a lame response. I did not accuse anyone of deliberate cheating because that is not the problem in science. As Dr Gundersen should be well aware, if he is ever to be able to assess his peers, science is full of people cheating without realising that is what they are doing - cherry picking and massaging procedures in the belief that they are discovering the truth. Trying to 'improve' the trial results must surely have been the subconscious reason for sending out a newsletter of this sort since it is normally unheard of in clinical trials to send out material like this. In fact Dr Gundersen's letter seems to be a case of the same thing. He raises no substantive arguments and just repeats what the PACE authors claim to be their intentions. I assume he has no experience of judging clinical trials and applying them to management of real people. His arguments would not get very far in a clinical journal club.

It is a pity he did not have the courtesy to reply to me directly. I feel now I have to communicate purely through social media.

 

[TiredSam]

I did not accuse anyone of deliberate cheating

Deliberately taking offence is another yawnworthy device from Gundersen to distract and lower the level of debate.

From Gundersen:

and patients must bear to be contradicted without feeling offended.

Pot, kettle.

coordinated criticism Edwards says he is part of ...

I can't see the phrase "coordinated criticism" in Prof. Edwards' letter, but doesn't Gundersen's use of the adjective "coordinated" make it all sound so sinister?

... is partly unreasonable and is also mixed with personal attacks.

I refer my learned friend to the above-mentioned kettle.

If he believes that scientists have deliberately cheated, he should say it straight out instead of implying it.

What level of debate is this? Are we in the school playground?

 

[Valentijn]

It is intriguing that Dr Gundersen should produce such a lame response.

I thought it was very weak as well. Nothing substantial, and he repeats a fairly strong point of criticism against the methodology of the trial, which just reinforces your own message. And everything else he says is incredibly vague and unsupported by any data or quotations. Overall, it looks like he's backing down, without admitting to backing down

It is a pity he did not have the courtesy to reply to me directly. I feel now I have to communicate purely through social media.

It's so unfortunate when someone publicly refuses to admit their errors even when they know they don't have a leg to stand on, and gets publicly embarrassed as a result

 

[user9876]

Perhaps the question for Gundersen is where are the 'similarly good responses by the authors' to the issues of outcome switching. They have never responded to questions of whether switching the outcomes for recovery were approved by the ethics committee or even the trial steering committee and they have never corrected their statistical mistakes in the justification for their changes.

 

[Kalliope]

Dear prof Gundersen. Welcome to the forums!

I agree with @Kati
Prof. Gundersen: welcome on board as someone with a genuine interest in research on ME and someone who wants effective and documented treatment options for the patients.

You have read the PACE-trial and David Tuller’s criticism of the trial, and you still support the trial; could you please explain why the criticism is not justified?
If you have spotted any factual mistakes in the critisism of the PACE-trial, I am sure David Tuller would be grateful if you shared them.

I seem to recall you tweeted that you’ve read the IOM-report on ME, but that you disagree with it?
If the authors of the report have overlooked anything, or drawn faulty conclusions, then the right thing to do is speak up, as you have. I would appreciate if you could share why you don’t agree with the report. What mistakes were made, in your opinion?

If you can point us towards how the IOM-report was wrong and the PACE-critisism is unjustified, you’ll be helping us on our way to more accurate research - which I am sure is a mutual goal.

 

[deleder2k]

It is intriguing that Dr Gundersen should produce such a lame response. I did not accuse anyone of deliberate cheating because that is not the problem in science. As Dr Gundersen should be well aware, if he is ever to be able to assess his peers, science is full of people cheating without realising that is what they are doing - cherry picking and massaging procedures in the belief that they are discovering the truth. Trying to 'improve' the trial results must surely have been the subconscious reason for sending out a newsletter of this sort since it is normally unheard of in clinical trials to send out material like this. In fact Dr Gundersen's letter seems to be a case of the same thing. He raises no substantive arguments and just repeats what the PACE authors claim to be their intentions. I assume he has no experience of judging clinical trials and applying them to management of real people. His arguments would not get very far in a clinical journal club.

It is a pity he did not have the courtesy to reply to me directly. I feel now I have to communicate purely through social media.

I don't think he'll answer here. He is active on Twitter though.
Do tell if you want me to translate your response.

 

[GreyOwl]

What is a "neutral encouragement" anyway? Surely that's an oxymoron? (@deleder2k thank you for the translation, it is excellent).

 

[alex3619]

For the most part the authors of the PACE papers tell you exactly what they did. So they can hardly be accused of Fraud. However if David Tuller is correct, and I have not followed up and confirmed this, they deliberately chose statistical methodology that at least some of them knew was invalid and biased toward getting the result they wanted in the determination of "normal" using SF-36PF. This was not an error, nor mistake, nor oversight. So what is it? Deliberately using a biased and invalid method is ..... ?

 

[Marky90]

What is a "neutral encouragement" anyway? Surely that's an oxymoron? (@deleder2k thank you for the translation, it is excellent).

True oxymorons is something that is "surprisingly true", and the stance that the sucess stories were nothing but "neutral ecouragement" is simply false, and no more than a contradiction. I advice Gundersen to read a bit more extensively on the placebo effect, but I suspect he`s to busy playing the victim of our orchestrated attack on academic freedom and democracy..

 

[A.B.]

Deliberately using a biased and invalid method is ..... ?

Fraud with plausible deniability?

 

[Marky90]

For the most part the authors of the PACE papers tell you exactly what they did. So they can hardly be accused of Fraud. However if David Tuller is correct, and I have not followed up and confirmed this, they deliberately chose statistical methodology that at least some of them knew was invalid and biased toward getting the result they wanted in the determination of "normal" using SF-36PF. This was not an error, nor mistake, nor oversight. So what is it? Deliberately using a biased and invalid method is ..... ?

Moreover; deeming patients "recovered" when their withdrawn objective tests revealed function levels worse than 80-year olds - if that`s not deliberately deceptive, what is? They`re hiding extremely poor data behind deceiptful use of language and conclusions. It`s the clearest case of crime I have ever witnessed. It`s second to robbing a bank in pure daylight!

 

[alex3619]

Moreover; deeming patients "recovered"

Well, here is the thing. They create technical definitions of words. Under their definition these patients are indeed recovered, its just that recovery means something totally different and can include severe disability. However they then do not use caveats in their general discussion, and allow others to misinterpret what they say. I wonder sometimes if they even fool themselves.

Here is how I think it works. They create a technical definition. They apply it. The conclude a highly technical result using the terminology that is usually taken to mean something different. If questioned, its your fault for misunderstanding. They said what it was. They use this aberrant terminology in press releases and interviews. If not questioned they do not correct anyone, allowing that person to draw the wrong conclusion. This is not what I expect from either doctors or scientists. They have failed my expectations. Now that mainstream scientists are aware of this, they have made their displeasure plain.

 

[BurnA]

Fraud

A false representation of a matter of fact—whether by words or by conduct, by false or misleading allegations, or by concealment of what should have been disclosed—that deceives and is intended to deceive another so that the individual will act upon it to her or his legal injury.

Fraud is commonly understood as dishonesty calculated for advantage. A person who is dishonest may be called a fraud. In the U.S. legal system, fraud is a specific offense with certain features.

Fraud is most common in the buying or selling of property, including real estate, Personal Property, and intangible property, such as stocks, bonds, and copyrights. State and federal statutes criminalize fraud, but not all cases rise to the level of criminality. Prosecutors have discretion in determining which cases to pursue. Victims may also seek redress in civil court.

Fraud must be proved by showing that the defendant's actions involved five separate elements: (1) a false statement of a material fact,(2) knowledge on the part of the defendant that the statement is untrue, (3) intent on the part of the defendant to deceive the alleged victim, (4) justifiable reliance by the alleged victim on the statement, and (5) injury to the alleged victim as a result.

 

[Jonathan Edwards]

I don't think he'll answer here. He is active on Twitter though.
Do tell if you want me to translate your response.

It seems that for some reason my email to Dr Gundersen was not received. That is a pity but at this stage I see no reason to keep further discussion private to be honest. Twitter seems to me to be a pretty mindless way to discuss important issues like this. I would be very happy if Dr Gundersen joined our discussions here. Science has no right to see itself as having some sort of immunity to patient criticism. The arrogance with which Peter White implied in Bristol that it does still seems to me quite extraordiary.

 

[A.B.]

Science has no right to see itself as having some sort of immunity to patient criticism. The arrogance with which Peter White implied in Bristol that it does still seems to me quite extraordiary.

This branch of psychiatry seems to specialize in ignoring reality and constructing unscientific (unfalsifiable) belief systems.

Patients are the reality. It's hard to understand how they've managed to ignore patients for over twenty years. The CBT and GET model was criticised in the 90s as well.

 

[Marky90]

It seems that for some reason my email to Dr Gundersen was not received. That is a pity but at this stage I see no reason to keep further discussion private to be honest. Twitter seems to me to be a pretty mindless way to discuss important issues like this. I would be very happy if Dr Gundersen joined our discussions here. Science has no right to see itself as having some sort of immunity to patient criticism. The arrogance with which Peter White implied in Bristol that it does still seems to me quite extraordiary.

When he was kindly asked to participate in discussion here, he replied "no F***** way i will visit that beehive, I would need a bodyguard". I guess the invitation was vexatious..