News from The Netherlands

[Grigor]

That's really great to see, he did his research. Where was this published?

He just posted it on LinkedIn. It was after the publication of the NOS. It deserves a bigger platform though.

 

[Jesse]

He just posted it on LinkedIn. It was after the publication of the NOS. It deserves a bigger platform though.

For sure! That's a shame.

 

[Sean]

Excellent article. Thank you.

Is the NVK certain that the use of the combination CBT/ GET cannot be harmful to patients with ME/CFS?


Apparently, despite its confidence in CGT/GET, the NVK does not dare to give that guarantee.

Because if they did they would be opening themselves to massive lawsuits. They know that.

They do not have the courage of their convictions. It is bluff and bluster, and arrogance and dishonesty, and cowardice all the way down.

As always.

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Find attached a PDF of the full article by Ernst Jurgens, a brief extract of which about FitNet was quoted on page 7 of the Zurhake's article.

This is the original Dutch version. Will need translating.

 

[Grigor]

Ernst Jurgens, occupational physician and medical biologist, on the Dutch FITNET study.

 

[rvallee]

Damn. Not pulling back. This is great, thanks for sharing @Grigor.

I believe that you should not let patients judge evidence. Science is not an opinion. Research must meet strict criteria.

This quote contains so much about the problem, and medicine's intransigence in its assertion of superiority over our own experience of reality.

Ironically, this is generally true, but that's because most evidence is not subjective. Here it is 100% subjective, and so we can not only judge it, the whole evidence base here is basically at a high school level of complexity. I cannot judge 99% of biomedical research. I sure can judge the hell out of this because it's simple enough for it. A child can, and do, see the many flaws and problems with it.

But it goes on. Because, true, science is not an opinion. This whole body of evidence, however, is. Hence, it is not science, which has long been one of the main points of criticism. But they miss that completely. Smugly pointing out something that breaks their case, as if it does. Truthiness reigns supreme here.

But the kicker is about strict criteria. They don't follow strict criteria, so how the hell is that a defense of their terribly flawed opinions about our own subjective life experience? They never do rigorous assessments, because they know that they debunk all their claims. They need it to be flimsy and vague, or it falls apart entirely.

Very good observation that this model is built on authoritarian attitudes. Every single one of the claims that scientific medicine can make about the wonders it can do are missing from it. Instead what they do for us is nothing but "the beatings will continue until morale appears to improve on biased questionnaires we will arbitrarily interpret as we see fit".

It's the opposite of science, the opposite of what health care is about, and the opposite of what a good empathetic person, not even a clinician, just a person, should want to do.

 

[Grigor]

I wrote about Sanne Nijhof and Elise van de Putte as well. The full quote was this though. She tried to do an Esther Crawley by making a comparison with anti-vaxxers. They were working together on FITNET-NHS at the time. Pretty cheap!

What the media reports about the Long-Covid clinics for children do not tell you. - Anil van der Zee

I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories of children and young people with long COVID incredibly distressing; they are consistent with what we have seen in ME for decades. Many of those with ME are...

anilvanderzee.com

“Listening to patients is good,” says pediatrician and professor Elise van de Putte. “Of course you should take patients seriously. Of course you should want to know what they think of their treatment and how they are treated. But should you also let them judge scientific evidence?” She doesn’t think so. “You also don’t ask anti-vaxxers to judge the evidence for the effectiveness of vaccinations. Science is not ‘opinion’."

 

[Grigor]

Ernst Jurgens, occupational physician and medical biologist, on the Dutch FITNET study.

Ernst Jurgens is part of the guidelines committee for ME. So along side Hans Knoop en Jos van der Meer etc. And he's not a push over so. Hopeful stuff!

 

[Utsikt]

«But should you also let them judge scientific evidence?” She doesn’t think so. “You also don’t ask anti-vaxxers to judge the evidence for the effectiveness of vaccinations. Science is not ‘opinion’.»

So all patients are scientifically illiterate? Or just the ones that disagree with you?

 

[rvallee]

So all patients are scientifically illiterate? Or just the ones that disagree with you?

Hard to find another interpretation. Maybe it was a bit hyperbolic, but it makes it come out very wrong. It's definitely hard to judge good science. Their junk isn't even bad science, it's pseudoscience, and should be judged the hell out of.

 

[Utsikt]

It's definitely hard to judge good science. Their junk isn't even bad science, it's pseudoscience, and should be judged the hell out of.

Yeah. I’m never going to claim that I can say anything about a GWAS. But I think I’m able to point out when someone e.g. lies about what their data says, confuse correlation with causation, or combine subjective (and meaningless) outcomes with unblinded interventions.

It’s also a lot easier to spot red flags than to give something the all clear. One red flag can be enough to ruin a paper and make the considerations that require expertise moot.

Besides, it’s not like the basic scientific methods and principles are that different between fields. 95+ % of papers that are posted here doesn’t require more knowledge than what I had at high school from physics and statistics classes.

 

[Kitty]

So all patients are scientifically illiterate? Or just the ones that disagree with you?

Stands out like a sore thumb, doesn't it?

Yet some patients have allowed themselves to be misled. That's largely the fault of doctors and biomedical researchers for making unverified or unjustified claims, but if patients believe them without ever questioning the claims, perhaps they're not in the best position to judge.

But it doesn't mean they can't be helped to read studies with a more sceptical eye, and certainly not that they're comparable to anti-vaxxers.

 

[Sean]

Not patients who are behaving like anti-vaxxers.