News from Scandinavia

[Kalliope]

It worries me that the Research Ethics committees has shared the article on Facebook. Does this imply they support the LP trial despite the criticism it has received?

I've noticed they've also shared another Khrono article from yesterday interviewing researcher Arnstein Mykletun, senior researcher at the Norwegian Institute for Public Health. He says that researchers must be prepared to deal with some criticism. But in today's article with Wyller he says the opposite.

Yesterday's article:
Forskere må ikke være for lettskremte
google translation: Researchers must not be too easily intimidated

quote:
Arnstein Mykletun has published some scientific articles on chronic fatigue syndrome (ME) - but the debate climate around this topic makes it more tempting to do other research, he says.

The articles he wrote about ME led to the most serious incitement he has received throughout his career. He was contacted by many angry and despairing people.

- Some of it could look like threats. I have also received handwritten letters and phone calls, saying that they know where I live and so on. I see it more as an expression of opinion, and do not experience it as dangerous. We are talking about people who feel that the research becomes personal and political, and want to catch up. I have thought that I will endure it.

 

[benji]

The LP study is mainly at NTNU, Wyller is just a co-supervisor from the university in Oslo, I'm not sure UiO needs to stand up to anything as things are. Stølen (headmaster at the university Wyller works at) has previously used the complaints against the LP study as an example on how activism tries to prevent research. It was an offhand comment in an opinion piece on free science, but Stølen must have heard about the example from somewhere and decided to use it.

That is true, but seems that Stølen at least have the knowledge not to retweet this article. Not very much, but something good.


And @Kalliope I agree. There is a marked shift in Mykletun from the day before and today. Wouldn’t be surprised someone with influence influenced what today’s article said.

 

[Sphyrna]

The article is shockingly poor, but this little piece of research linked caught my eye:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3105457/pdf/SHORTS-11-016.pdf

I'm glad that the Lightning Process used to be seen as the phony CAM treatment it is. A shame that we forgot all about that, now that the "evidence-based" treatments are increasingly falling out of favour, so that we have to fill this void with *anything*.

 

[Adrian]

Great timing for a hit piece same week as the National Committee for Medical and Health Research Ethics will be having the complaints concerning the planned study on Lightning Process on their agenda.

I'm sick to my stomach after having read the article and the way he describes patients. This was a low move, even from him.

It the ethics committee really know about ethics then I think the article would concern them in terms of a doctor using a position of power to dismiss a whole group of patients and they wouldn't be naive about the timing either. But that is probably hoping for too much from an ethics committee.

 

[Jonathan Edwards]

Researchers that are against the BPS model are close to pwME and not objective.

Have I been rumbled? Being close to patients must be a conflict of interest it seems.

 

[Midnattsol]

Have I been rumbled? Being close to patients must be a conflict of interest it seems.

It somehow prevents you from understanding the field.

- Are there professionals who agree more with the ME association?

- Yes, there is also a division in the professional environment. Some professionals who have spoken on behalf of the patient organizations have not been clear that they are also relatives. Several of them have presented themselves with doctoral titles, but have little academic knowledge of research in the field, he [Wyller] says.

 

[Kalliope]

That is true, but seems that Stølen at least have the knowledge not to retweet this article. Not very much, but something good.

But sadly he liked this tweet from prof. Gundersen sharing the article with the following comment (my translation): This ought to be a "case" in the discussion about academic freedom. Being a researcher should not be a popularity contest. And it is the institution's damn duty to protect the unpopular researchers. And kudos to Wyller who is standing firmly.

 

[Snowdrop]

Draft NICE guidelines go against the scientific community and NICE has been pressured by activists.

And in line with that statement -- I'm crying a river of real tears for them. Really. Truly.

 

[Snowdrop]

Also, it does introduce the question: Is it ever OK to question the ethics and integrity of any research? Should all research ideas be allowed?

Psychology is littered with research that has had horrific consequences / been found unethical etc.

So again, when exactly is it OK to speak up when there is reasonable doubt as to research having value or some reason to suspect harm? And why do patients on whose behalf the research is intended not have any agency in this? Are they just inert subjects incapable of thought or reason?

And when others speak up, it's not out of reason but out of a too close relationship to people who've effectively been marginalised and cut off from being allowed to respond from their own experience. The treatment will work damn it! Ill people need to get on board.

The arrogance of the BPS cabal have put themselves in this situation where they have to be right at any cost. They have only themselves to blame.

 

[Jonathan Edwards]

Yes, there is also a division in the professional environment. Some professionals who have spoken on behalf of the patient organizations have not been clear that they are also relatives. Several of them have presented themselves with doctoral titles, but have little academic knowledge of research in the field, he [Wyller] says.

Excuse me, Mr Wyller mate. I ain't no relative and I'm a proper professor like you mate.
Someone is talking through his backside.

And it is pretty strange to suggest that a relative of a patient is just parroting a malingerer's distortions designed to get disability pay - or whatever reason might be cooked up for wanting bad research to dominate .

 

[ME/CFS Skeptic]

Frustrating article.

I don't quite understand what they are trying to accuse ME activists of: It always seems to come down to: "activists want ME to be viewed as a biomedical disorder."

But as Arnstein Mykletun himself says in the article (translated with google): "This distinction does not make sense - even when I now talk about this, biological processes happen in my head, he says." So if it doesn't make sense or is redundant then why do they argue that this is the crux of all the controversy? Also: The whole point of the biopsychosocial view is that psychosocial interventions such as exercise and CBT should also be considered for physical disorders like MS, cancer etc. So why would ME activists be so angry if they are offered exercise and CBT as well? This explanation doesn't make much sense if you think about it a bit further.

The people in the article argue that ME patients don't want anything to do with these psychosocial interventions. But if that's the case then who are the hundreds of patients who report having tried GET or CBT only to get worse afterwards? Clearly, this indicates that a lot of ME patients were open-minded and simply wanted to get better, regardless of whether ME was viewed as biological or not.

If I understand correctly they think that exercise, CBT and the lightning process are all effective treatments for ME/CFS but patients organisations and other researchers reject them all consistently,(for decades and across countries)? That's quite extraordinary. Not sure if there is a precedent for something like this. One would hope that journalists ask some further questions about this. After all, there's another explanation: perhaps the theory and treatment those researchers fancy isn't quite as good as they claim to be?

Good that the Norwegian ME Association was able to respond but the article itself remains unbalanced: they should have contacted some of the researchers who criticized this psychosocial view of ME in the literature. EDIT: James Coyne, David Marks, Caroline Wilshire, Leonard Jason, David Hughes, etc. are all psychologists. I wonder what they will argue their conflict of interest is.

 

[Hoopoe]

I don't quite understand what they are trying to accuse ME activists of

Perhaps the researchers want confirmation for their ideas from patients. They want to be feel useful and make a difference.

Perhaps they don't realize, being immersed in their academic culture, that their ideas are often ugly prejudice, easily shown to be wrong, and not insightful and brilliant as they believe.

In other words, they researchers are fighting with their own mental rigidity and self-esteem. Nobody is forcing them to stick to ideas that patients perceive as false and harmful. Maybe in their academic circle it's simply impossible to be open minded (open-mindedness goes both ways).

 

[Midnattsol]

Frustrating article.

I don't quite understand what they are trying to accuse ME activists of: It always seems to come down to: "activists want ME to be viewed as a biomedical disorder."

But as Arnstein Mykletun himself says in the article (translated with google): "This distinction does not make sense - even when I now talk about this, biological processes happen in my head, he says." So if it doesn't make sense or is redundant then why do they argue that this is the crux of all the controversy? Also: The whole point of the biopsychosocial view is that psychosocial interventions such as exercise and CBT should also be considered for physical disorders like MS, cancer etc. So why would ME activists be so angry if they are offered exercise and CBT as well? This explanation doesn't make much sense if you think about it a bit further.

The people in the article argue that ME patients don't want anything to do with these psychosocial interventions. But if that's the case then who are the hundreds of patients who report having tried GET or CBT only to get worse afterwards? Clearly, this indicates that a lot of ME patients were open-minded and simply wanted to get better, regardless of whether ME was viewed as biological or not.

If I understand correctly they think that exercise, CBT and the lightning process are all effective treatments for ME/CFS but patients organisations and other researchers reject them all consistently,(for decades and across countries)? That's quite extraordinary. Not sure if there is a precedent for something like this. One would hope that journalists ask some further questions about this. After all, there's another explanation: perhaps the theory and treatment those researchers fancy isn't quite as good as they claim to be?

Good that the Norwegian ME Association was able to respond but the article itself remains unbalanced: they should have contacted some of the researchers who criticized this psychosocial view of ME in the literature. EDIT: James Coyne, David Marks, Caroline Wilshire, Leonard Jason, David Hughes, etc. are all psychologists. I wonder what they will argue their conflict of interest is.

"Activists want ME to be viewed as a biomedical disorder" and "activists are anti-psychology".

 

[rvallee]

Frustrating article.

I don't quite understand what they are trying to accuse ME activists of: It always seems to come down to: "activists want ME to be viewed as a biomedical disorder."

But as Arnstein Mykletun himself says in the article (translated with google): "This distinction does not make sense - even when I now talk about this, biological processes happen in my head, he says." So if it doesn't make sense or is redundant then why do they argue that this is the crux of all the controversy? Also: The whole point of the biopsychosocial view is that psychosocial interventions such as exercise and CBT should also be considered for physical disorders like MS, cancer etc. So why would ME activists be so angry if they are offered exercise and CBT as well? This explanation doesn't make much sense if you think about it a bit further.

The people in the article argue that ME patients don't want anything to do with these psychosocial interventions. But if that's the case then who are the hundreds of patients who report having tried GET or CBT only to get worse afterwards? Clearly, this indicates that a lot of ME patients were open-minded and simply wanted to get better, regardless of whether ME was viewed as biological or not.

If I understand correctly they think that exercise, CBT and the lightning process are all effective treatments for ME/CFS but patients organisations and other researchers reject them all consistently,(for decades and across countries)? That's quite extraordinary. Not sure if there is a precedent for something like this. One would hope that journalists ask some further questions about this. After all, there's another explanation: perhaps the theory and treatment those researchers fancy isn't quite as good as they claim to be?

Good that the Norwegian ME Association was able to respond but the article itself remains unbalanced: they should have contacted some of the researchers who criticized this psychosocial view of ME in the literature. EDIT: James Coyne, David Marks, Caroline Wilshire, Leonard Jason, David Hughes, etc. are all psychologists. I wonder what they will argue their conflict of interest is.

I don't think it's more complicated than we have to be wrong for them to be right. So promoting how wrong we are is how they are perceived as right. Not really but they have a purely antagonistic approach with us and no one objects so bullying they go. Normally people should tell them to quit it because it's disgusting behavior but chronic illness being one of the last acceptable bigotries means no one dares speak out because they will be attacked in turn if they do.

As long as we are "wrong" they are "right". So they attack and attack, they have nothing else. Never have, never will. The Reuters "special report" made it obvious that the substance doesn't matter here. The tweets presented as abusive were anything but, people ate it up anyway. They can simply claim we are abusive even if a quick glance makes it clear otherwise. Hardly gets any more Kafkaesque.

 

[Rain]

Excuse me, Mr Wyller mate. I ain't no relative and I'm a proper professor like you mate.

I don’t have the stomach to read the full text. But I assume this was meant to be a hit against a Norwegian Professor? Not any less disgusting...

How can he think that disclosing an adult relative’s private story should be required before being able to speak publicly about something one is professionally qualified to have an opinion on anyway?

 

[mango]

Jonas Axelsson's RED Clinic in Stockholm, Sweden, has changed names and is now Ameliekliniken.

https://www.ameliekliniken.se/

 

[Midnattsol]

In this article in Dagens Medisin ("Daily Medicine", a newspaper for medical news) the authors write about how important it is to have an holistic, biopsychosocial view of the patient when treating chronic fatigue (CFS/ME mentioned). Long term chronic fatigue and pain are no longer medically unexplained, but a result of complex BPS interactions. Treatment must be tailored to the individual as we are all different. The medical system places too much focus on diagnostics - and not enough on treatment (too many tests can also lead to a worse outcome for the patient).

Although they keep saying we need to focus on treatment, there is nothing in here that says what this treatment should be, except "personalized" and holistic BPS, and it seems to involve psychiatric help as they argue psychiatric servies must be strenghtened. The article is focused on children.

"Er pakkeforløp riktig løsning for utmattede pasienter?"
https://www.dagensmedisin.no/artikl...orlop-riktig-losning-for-utmattede-pasienter/

Google translate: "Is the package process the right solution for exhausted patients?"
https://translate.google.com/transl...orlop-riktig-losning-for-utmattede-pasienter/

I'm not sure how to translate "package process", it is a sort of package of treatments I guess, so that when you get a diagnosis there is a clear way forward for how the health care system should treat/manage you as a patient. It includes what deadlines the healthcare system has, what treatment options you have etc. The authors worry this approach will not work when treatment has to be very personalized.

 

[Kalliope]

In this article in Dagens Medisin ("Daily Medicine", a newspaper for medical news) the authors write about how important it is to have an holistic, biopsychosocial view of the patient when treating chronic fatigue (CFS/ME mentioned). Long term chronic fatigue and pain are no longer medically unexplained, but a result of complex BPS interactions. Treatment must be tailored to the individual as we are all different. The medical system places too much focus on diagnostics - and not enough on treatment (too many tests can also lead to a worse outcome for the patient).

Although they keep saying we need to focus on treatment, there is nothing in here that says what this treatment should be, except "personalized" and holistic BPS, and it seems to involve psychiatric help as they argue psychiatric servies must be strenghtened. The article is focused on children.

"Er pakkeforløp riktig løsning for utmattede pasienter?"
https://www.dagensmedisin.no/artikl...orlop-riktig-losning-for-utmattede-pasienter/

Google translate: "Is the package process the right solution for exhausted patients?"
https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.dagensmedisin.no/artikler/2021/03/17/er-pakkeforlop-riktig-losning-for-utmattede-pasienter/

I'm not sure how to translate "package process", it is a sort of package of treatments I guess, so that when you get a diagnosis there is a clear way forward for how the health care system should treat/manage you as a patient. It includes what deadlines the healthcare system has, what treatment options you have etc. The authors worry this approach will not work when treatment has to be very personalized.

Just adding that among the authors are Signe Flottorp from the Norwegian Institute of Public Health and Helene Helgeland - paediatric psychiatrist and leader of the national competence center for complex psychosomatic conditions in children and adolescence at Oslo University Hospital.

 

[Midnattsol]

Just adding that among the authors are Signe Flottorp from the Norwegian Institute of Public Health and Helene Helgeland - paediatric psychiatrist and leader of the national competence center for complex psychosomatic conditions in children and adolescence at Oslo University Hospital.

An important point I didn't notice.

New article in Khrono today also, with the headmaster at UiO talking about the importance of free science.
— Bryter med normer for en åpen og kunnskapsbasert dialog

Google translate
- Breaks with norms for an open and knowledge-based dialogue

Wyller also asked for support from his own principal, Svein Stølen. And Stølen gives him support, after Tuesday's case in Khrono:

- No one should be intimidated or threatened to isolate themselves in what is caricatured as the "ivory tower" due to incitement, personal attacks or exhausting attacks. Academic freedom must be protected. Here, the leaders of the sector must be a clear voice.
...
- The development requires new and revitalized dialogues between research and society. Criticism and debate must be a matter of course, but also our researchers' freedom to choose their own issues, their methods and to freely publish their research.
...
- Blockades and systematic and active opposition to research that various interest groups do not accept are demanding, and our response as a society must be thought through, he says.

Completely ignores the criticism against the methodological problems in the field.

 

[Kalliope]

New article in Khrono today also, with the headmaster at UiO talking about the importance of free science.
— Bryter med normer for en åpen og kunnskapsbasert dialog

Google translate
- Breaks with norms for an open and knowledge-based dialogue



Completely ignores the criticism against the methodological problems in the field.

oh, what a pity to see.

I don't think it's a reasonable demand for institutions to support their researchers no matter what. I'd say in contrary. Somewhere in the institutions there surely must be someone responsible for some kind of quality control?

It didn't go well when Karolinska ignored whistleblowers and controversies, and instead decided to blindly support and stand behind Paolo Macchiarini.

BBC has a summary here
Swedish Nobel judges fired in Karolinska medical scandal