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

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?

 

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?

 

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?

 

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.

 

Thanks. I find that useful to know re the likely accuracy of the notes and chances of errors.

Thanks for attending and letting us know what was said - I hope it didn't take too much out of you.

 

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.

 

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.

 

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.

 

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.

 

That is interesting, what was his theory of fatigue (albeit associated with specific diseases)?

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.

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.

 

Your comment is right on point!

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

 

Lol

 

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.)

 

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.

 

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.

 

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.

 

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.:

• In-Depth Analysis of the Plasma Proteome in ME/CFS Exposes Disrupted Ephrin-Eph and Immune System Signaling, 2021, Hanson et al [https://www.s4me.info/threads/in-de...e-system-signaling-2021-hanson-et-al.18886/]; and
• Chris Ponting's GWAS study

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