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"What if the patients are right, Kristian Gundersen?"

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Journalist Jørgen Jelstad, which has written the critically acclaimed book "De bortgjemte" ("the hidden"), just wrote one of the best articles i have read regarding ME.
As some of you remember prof. Kristian Gundersen recently criticised patients in one of the biggest norwegian papers, for using their voices basically.

I`m not sure how good it is through google translate, but here is the link to the article : https://debortgjemte.com/2016/04/26/hva-om-pasientene-har-rett-kristian-gundersen/.

Maybe it can be translated at a later time, if Jelstad so wish.

Edit: I saw @deleder2k already mentioned this in another thread, this one can be deleted :)
 
Last edited:

Simon

Senior Member
Messages
3,789
Location
Monmouth, UK
Critic of patients still wants to see PACE data released:

Interesting to see that Prof Kristian Gundersen, despite generally portraying patients' objections as unreasonable, does support the release of PACE data

Jorgen Jelstad said:
Now enter Gundersen laudable enough that the request for access to data is legitimate and should be complied with, so where we agree.

Good section from Jorgen explaining why data needs to be released
The problem is that while scientists refuse access to raw data for independent analysis, we will never get good answers in PACE controversy. As a journalist (as I myself am) however, it is always one thing that triggers interest more than anything else, and that is when someone actively works to keep something away transparency (ref. The debate on sports peak travel expenses VG). I have a hard time understanding why not PACE scientists can only make an analysis of the results from the methods they had set up in the minutes before the study started and make them public. If the data is good, it is the no danger

And a very good article by Jorgen Jestad
 

Dolphin

Senior Member
Messages
17,567
I thought this was a very good article also.

Here's an extract:

It is also important to be aware that many of the committed patients are also very intellectually astute. Patients are not just patients. They are also former doctors, researchers, statisticians, nurses, bureaucrats, politicians, political scientists, doctoral students and professors. Disease strike blindly. Being ill does not mean that you lose all your previous skills.

Much of the criticism of the PACE study, patients were therefore also scientifically well justified and relevant.
 

Dolphin

Senior Member
Messages
17,567
I fixed up the translation a little:

Tuller's article has led to an intense public debate on the PACE study. The debate is all now [only to] a small degree [about] critical patients. On the contrary, there is a number of reputable professionals which already was totally unfamiliar with PACE controversy that has now thrown himself into the debate. The remarkable thing was that many of them were in agreement with much of the criticism which previously only had come from patients. In short - they believed the critical patients on many points had been right. It was just that people were not interested in listening to them before Tuller wrote his article.
 

Dolphin

Senior Member
Messages
17,567
It does not help that it seems that PACE researchers for dear life trying failing to share anonymized raw data so that others can analyze them. Gundersen pointed out that the argument against extradition is that scientists say it conflicts with the confidentiality of patients, and that data already made available to other researchers - which in itself is contradictory. If confidentiality of the patients were so extraordinary that even anonymous raw data can be shared, how scientists can then already have chosen to share them with some scientists, while they refuse to share with others.
 

Dolphin

Senior Member
Messages
17,567
The controversy about PACE will surely continue for a while. But unlike the Gundersen argues, may soon PACE controversy end up being a positive story about patient engagement and research. About competent patients who are so much more than just patients. They are doctors, scientists, statisticians, teachers, plumbers, nurses, lawyers, architects, cleaners, professors, journalists ... they are you and me. They have been so unfortunate to be seriously ill. But they can still think and reason, think and have important knowledge. It turns PACE story that we should be happy.