Psychiatric conference in Norway nov. 2019 themed "Stressology" (Wyller among lecturers)

Esther12 said:
Thanks for all that info @Kalliope

Interesting he brought up PACE on his own, and is still heaping praise on it (it probably is a better piece of research than he could manage to design).

I don't suppose you recorded it?
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I do get the impression that he might have placed himself in an ivory tower and frankly doesn't pay that much attention to the PACE debate, biomedical research, patient organisations etc.

I did record it, but only for my own note taking. As far as I'm aware it wasn't filmed or recorded otherwise.
 
Snowdrop said:
Is it? Because I don't think so.



I presume by ethically he means the UK Health Research Authority (IIRC) but does anyone know what he means by legally?
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I gathered too that he meant the UK HRA, but he had also just mentioned the tribunal case.
Here's what he said in his own words:

It's actually a fact that cognitive therapy is the only thing that is properly scientifically documented. You in the audience know more about cognitive therapy than me, so I won't go into what it's about, other than it's to do with psycho-education, explanation, discussing automatic thoughts, some practical tasks, focus on coping. Preferably combined with activity adaption. This (as in activity adaptation) has an effect in itself, but perhaps even more combined with psychotherapy.

Already in 2006 I was the leader of a knowledge summarisation of this. Already then we concluded that this is proven to be of help. And then there has come additional studies afterwards. Many know of the PACE trial from 2011. A big, British study. It clearly showed that cognitive therapy was better than other treatments. They also had graded activity adaption, they had pacing, meaning to just feel yourself how much you can manage. Cognitive therapy was clearly best.

The PACE trial has been much criticised. Completely without cause, in my opinion. Completely unreasonably. It's been drawn for the British legal system and so on. But then it has been absolved for all its accusations both legally, ethical connections. It's a great study, published in the Lancet and still standing as an important study in this field.
 
Kalliope said:
I was able to attend Wyller's two lectures at this conference and took notes.

I've only read interviews, papers and debate articles from him, never attended a lecture before, so was curious what he would say when he had a big stage and and hour in total at his disposal.

I was not very impressed by his explanatory model for ME, and surprised that he still defends the PACE trial and recommends Lightning Process.
Here are some of the notes translated into English.

Fatigue model
Wyller did underline that what he has to offer is a model, that a lot of his research is based upon that model, and that they are far from being able to draw any conclusions.

The brain has automatic interpretations of what is happening in the body and expectations to what is going to happen. Sometimes they can be mistaken.

Whether an alarm is activated in an appropriate or inappropriate way, it will give a bodily stress response, as these are signals of danger. This again will lead to a change in the autonomic nerve activity, of the cortisol system and the immune system.

The immune system is not only what can cause fatigue, it's also affected by stress. The communication goes both ways. Our brain and hormonal system also controls the immune system.

Based on this they have suggested a complex model for fatigue. They try to put together everything they know empirically to a whole where personality, infections and life events cause the alarm to get jammed. This results into symptoms and a bodily stress respons, a sustained arousal which again leads to cognitive changes, autonomic changes, hormonal changes and in fact a low degree inflammation.

The patients
Many of these patients are ambitious, conscientious, a bit perfectionist. He meets many who will continue to study medicine or psychology or something similar, and exercise and have a thousand friends on Facebook. They do all this despite being sick. We are like animals in the sense of Pavlov’s rats (sic). We too have automatic learning. If you continue to expose yourself for strain that makes you tired while you have an infection, it’s easier to imagine that you via classical conditioning start to associate differently. Suddenly the infection has vanished, but then you get unusually tired from other things, because you have made a connection to it in your brain with having an infection.

He talks about a patient who had sent him a letter saying:
I went in and out of the hospital for two months due to mononucleosis. I became very attentive to my own body and started to consider myself as fragile. I became a master in listening to my body. If I experienced that something made me worse, I became more careful next time. Everything was about cause and effect. Mental training made me question my ideas on cause and effect. It made me do things I previously had thought were beyond my limits, without believing or being afraid of getting a reaction. And then I didn’t get a reaction.

This patient had been 1 1/2 years in a nursing home as a severe ME patient and recovered by Lightning Process. Wyller thinks this is a non medical version of the meaning of rumination.

Predicting future fatigue in patients with mononucleosis
He talked among other about his trial on mononucleosis and ME where adolescents were followed up for 6 month after the infection. He said that how you experience your symptoms in the beginning, how sensitive you are for light and sound for instance, predicts how tired you are after six months.
And more important; how anxious you are. If you worry a lot when you have mononucleosis, you will become more tired after six months. And also how well you remember. If you have a good memory, you will be more tired. He believes this corresponds with fatigue being an alarm caught in a jam. If you worry a lot, you will feel more fatigue. You will worry it won't pass, then start to expect it won't pass.

Criteria and prognosis
He believes fatigue is fatigue. It makes no sense to try splitting the long lasting fatigues into a lot of sub groups based on diagnoses. He prefers simple diagnostic criteria and criticises the Canadian criteria.
He believes that if you have a long term fatigue consequential for daily activities which can't be explained by other current physiological or psychological illnesses, then you have an unexplained fatigue or what is called CFS/ME. A lot of British researchers agree with him.

It’s important to offer empathy, hope and explanations. It’s a serious condition and there’s no solutions as simply thinking oneself better. But one can recover.
Many children and adolescents, in fact most of them, recover. It's important to tell them that, considering the importance of expectations.

Treatments, PACE and Lightning Process
Cognitive behaviour therapy is not just about dealing with a situation. With psychotherapy you can change the brain’s chemistry and function. Therefore cognitive therapy is just as good treatment as drugs.

Fatigue is real and not imaginary, even if it can’t be measured.

It’s important to underline that talking about body, mind and social structures is science and no capitulation for alternative medicine. In a biopsychosocial context, dividing treatment and coping is meaningless. Coping is treatment. Psychotherapy has biological consequenses and vice versa.

Cognitive therapy is the only thing that has been properly documented scientifically.
Many know of the PACE trial from 2011. A big British study that clearly showed cognitive behavioural therapy was better than other treatments. The PACE trial has been much critisised. Completely unreasonably and it has been absolved legally, ethically. It’s a great study. Published in the Lancet and still standing as an important study in this field.
He then went on to praise the FITNET study.

The LP study shows the same. LP is a phenomenon with cognitive techniques and other things, as positive psychology, etc. It is based in a bit alternative tradition, but has gradually gotten a pretty good academic, theoretical basis and has proven empirically to be useful. One of the things that can make Lightning Process very useful is that it makes patients experience that they can do something without becoming tired. It’s a learning-psychological effect in being tricked into do an activity and experience it as positive and suddenly no longer thinking about actually not being able to do it due to negative expectations. All of a sudden you’ve done it after all, and by that learned something different.

These patients deteriorate by advice as going for a run. Many will do that, because they are conscientious but then they just become worse. Then the reaction often is the opposite to lay oneself flat down and not daring to do anything, and obviously no one will get better by such approach.
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Textbook example of how a little knowledge can be dangerous. His knowledge of ME is entirely superficial and he seems to fill in the gaps with the kind of hope that ends up being toxic when it's unrealistic, which it absolutely is. Pretty similar to some people's rationalizations that poor people are probably poor because they deserve it and if they just tried harder they would not be so poor and because a tiny few, mostly though sheer luck, make it out then everyone should (just disregard massive evidence to the contrary). That's just not how any of this works.

Doesn't sound like a bad person but clearly has nothing of value to offer to the issue. Ultimately this is what is toxic to this field, people who have a very limited understanding but feel that it's sufficient enough to talk over other people about it, impose this ignorant opinion and suspend disbelief over garbage like PACE. I think this is about the same place as Wessely. Probably believes in his misunderstanding and how it could be helpful, but lacks any perspective to get it, it's just too foreign to his own experience.

That's the harsh lesson of science. Sometimes you can put in massive efforts and all the goodwill in the world but you're still wrong and ultimately failing and if you don't care to find that out then you never will. In medicine this is paid for in lives, just never theirs so they don't ever see that. We would all be better if he just never thought about this ever again and accepted he just doesn't know anything useful, it would literally make no difference, he simply brings nothing of value. It's seriously shocking how otherwise smart people can maintain that PACE is defensible, let alone good. That in itself is simply disqualifying.
 
Kalliope said:
The PACE trial has been much criticised. Completely without cause, in my opinion. Completely unreasonably. It's been drawn for the British legal system and so on. But then it has been absolved for all its accusations both legally, ethical connections. It's a great study, published in the Lancet and still standing as an important study in this field.
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This is seriously disappointing because ultimately there has only been one actual official proceeding regarding PACE, the HRA, which clearly stated that most of it fell outside of its remit besides dotting all i's, crossing all t's and getting approval for all the shady stuff that they did to achieve the result they wanted. His comment probably included the judicial review of the NICE guidelines but even that was just the system allowing something broken because it was desired. Doesn't change the facts that it's a universal failure everywhere it's been used in practice.

It's simply not a serious claim. None of the flaws have been addressed or defended. Literally. Not a single one. At best it points to the fact that the oversight process is completely broken and allows blatant fraud to be published simply by fact of having been cleared by people who were fine with what the fraud accomplished. It's blatantly clear that PACE showed the treatments are useless. Really shows how patients are ultimately irrelevant in this, and clearly neither is objective reality.
 
rvallee said:
Ultimately this is what is toxic to this field, people who have a very limited understanding but feel that it's sufficient enough to talk over other people about it
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Agree. If all you have is a hammer, everything looks like a nail.

Towards the end of one of the lectures in the question round Wyller talked about Australian research showing that long term fatigue post infection is common. The interesting part is that those who keep their fatigue also keep the symptoms characteristic for the initial infection.

In other words; if you have an infection with a lot of tooth ache, you will still have a lot of tooth ache a year later if you also have fatigue. If you have infections with joint pain in the acute phase, you will also keep these symptoms.

It's as if the symptom picture gets a hold as a kind of memory. He believes it then makes more sense to talk about a brain's automatic unconscious memory of the initial infection.
There's obviously also genes involved, but this is a way to understand these long lasting pictures. It's as if whatever was there initially sustains as an affliction, even though the starting point has changed.

He then pointed to inflammatory bowel disease. A lot of patients are very tired when they have inflammatory bowel disease, but then they keep being tired when the inflammation is gone.

However, prof. Omdal had just given a lecture about the biology behind fatigue and sat in the audience. He objected politely. He has researched fatigue for years. (Fatigue with an underlying illness, and unfortunately that doesn't include ME in his opinion). He said he's worked a lot with this and that patients apparently can go into remission of inflammatory bowel disease when it comes to symptoms. But if you take a closer look, there is still activity. These are autoimmune disease you can't get rid of. Even with treatment they are operative and the cytokine activation is still active. This might offer another explanation. The symptoms persists, but that may very well be because the illness persists.
 
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Kalliope said:
However, prof. Omdal had just given a lecture about the biology behind fatigue and sat in the audience. He objected politely. He has researched fatigue for years. (Fatigue with an underlying illness, and unfortunately that doesn't include ME in his opinion).
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That is interesting, what was his theory of fatigue (albeit associated with specific diseases)?

Kalliope said:
He said that an important reason for the harsh debate is that many believe ME is either psychological or biological. He believes research shows it's both.
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It's funny how ME patients themselves never bother with this debate. We simply get caught up in a debate that has long preceded us.

It is sad that questioning CBT on the basis of lack of objective measures of efficacy leads to our motives being questioned. For those promoting the therapy, our objections are suddenly not because of the lack of quality of evidence (if it was a drug it wouldn't be approved on the evidence provided), but we must have already made up our minds based on our a-prior beliefs.

It's sad how powerful the latter argument is to outsiders who don't understand that we don't care if an intervention is psychological or not, we don't care whether the illness is considered psychological or not, we are frustrated that interventions that lacks evidence of efficacy (of the standard required for a pharmacological evidence, either blinding or objective outcome measures such as actigraphy) is frequently promoted as being a high quality treatment.

We have the same objections against a myriad of other treatments including alternative-medicine treatments and other pharmacological treatments. The main difference is those other treatments are not being promoted as evidence-based by people in positions of authority.

Kalliope said:
I will define biopsychosocial as an ambitious, but unclarified 1970-notion, which has confused generations of experts and students ever since.
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The original proposal was quite optimistic. But instead of combining research approaches to build actual biopsychosocial models, the various disciplines instead decided to continue business as usual with their siloed approach and simply assert that their findings are magically connected to the other disciplines without actually doing the work.
 
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Your comment is right on point!

Snow Leopard said:
That is interesting, what was his theory of fatigue (albeit associated with specific diseases)?
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Omdal seems most interested in the cytokine interleukin-1 beta, but also talks about epigenetics, dysfunctions in the mitochondria, dysfunctions in neuronal systems.

Here is an overview of his research
https://www.researchgate.net/scientific-contributions/38446766_Roald_Omdal

Some of his work has been discussed at the forum

Pain and fatigue in primary Sjögren's syndrome, 2019, Omdal et al
https://www.s4me.info/threads/pain-and-fatigue-in-primary-sjögren’s-syndrome-2019-omdal-et-al.8404/

Interleukin-1-related activity and hypocretin-1 in cerebrospinal fluid contribute to fatigue in primary Sjögren's syndrome, 2019, Omdal et al
https://www.s4me.info/threads/inter...s-syndrome-2019-omdal-et-al.9650/#post-214299
 
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Kalliope said:
MD, Phd and professor Linn Getz gave a lecture just before professor Wyller. She was quite critical to the biopsychosocial approach and I really liked this quote from her:

I will define biopsychosocial as an ambitious, but unclarified 1970-notion, which has confused generations of experts and students ever since.
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Interesting to see that she was Vogt's PhD supervisor though.

I have supervised four phd theses and currently supervise three;

Supervised GP and now postoc at UiO Henrik Vogt, Phd: Systems medicine as a theoretical framework for general practice: A critical review, 2017.
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https://www.ntnu.edu/employees/linn.getz

(Just stumbled across that promising quote and, always looking for sensible allies for our case, had a look at her profile.)
 
MSEsperanza said:
Interesting to see that she was Vogt's PhD supervisor though.



https://www.ntnu.edu/employees/linn.getz

(Just stumbled across that promising quote and, always looking for sensible allies for our case, had a look at her profile.)
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aaah, that might be a plausible explanation as to why she's so supportive of him on social media. That has puzzled me because she appears to be more open to dialogue with patients and she doesn't share his aggressive style. I enjoyed her lecture.
 
Kalliope said:
Yes. I had expected more and was struck by the banality of it all. Is this really all he can come up with after having been a researcher in this field for such a long time?
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I don't have a a problem with simplicity of unoriginality, if it's actually true. The part I don't understand is why he continues to believe such a hypothesis when his own studies contradict it.
 
Snow Leopard said:
I don't have a a problem with simplicity of unoriginality, if it's actually true. The part I don't understand is why he continues to believe such a hypothesis when his own studies contradict it.
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Nobody wants to be known as the phrenology expert after phrenology got discredited. Same energy. Professionalism only goes so far, their self-interest is diametrically opposed to ours. Where they succeed we suffer and die and where we are freed from this nightmare theirs will begin. Not that it will actually hurt them in any way, it will only slightly derail their career.

Never put people's self-interest in opposition to their job's mission. They will always disappoint, or at least the vast majority will. It's a good job, they don't even have to pretend to work, it's all copy-paste and repeating the same stuff over and over again. Seriously one of the easiest job in the world: nobody even pays attention to it and the money is endless, they don't even have to put any effort in the proposals.

Seriously most academics will spend weeks or months of any given year simply writing grants that get rejected. These people can submit a napkin with a printed copy of their last proposal and it would get funded. It's a good scam they have going on.
 
Kalliope said:
Yes. I had expected more and was struck by the banality of it all. Is this really all he can come up with after having been a researcher in this field for such a long time?
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I haven't followed this or listened to the lecture.

I didn't actually mind the principle of testing whether GET, and CBT, works for people with ME - as I type that I realise that GET for people with disabling fatigue, how do you get that past an ethics committee? One of the things which bugs me is that the study [PACE] was crap, a complete waste of UK taxpayers money (£5 million) - I'm in the UK.

Fluge, and Mella, incorporated activity monitors into their Rituximab study - objective measurement of improvement [subjective measures - questionnaires used for PACE].

Objective measurement of outcome should be a basic requirement of any publicly funded research.

What is even worse is that these studies [where improvement is based on questionnaires] is that they then feed into public policy - you can get better with a kind listening voice and some moderate exercise.

I'm grateful to @Jonathan Edwards for explaining this crap --- it's failing people with ME, taxpayers who fund this --- hopefully Governments will get the message.

There are research areas to be funded e.g.:

So it's not as if there are no good research areas to pursue.
 
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