ME-seminar in Norway with Lillebeth Larun. LP-paper recommended as preparation literature

Esther12 said:
I was just going to check the date, thinking that it could indicate Larun expected to have a new Cochrane review out by then, but it seems that the page with the program is no longer on-line. Anyone got a copy?
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March 6.

Skogli updated the program to remove the ME association as co-host. Apparantly they were part of/invited to be part of a planning group, but non of their suggestions for speakers was approved, so resigned. They were unaware of the SMILE-study to be recommended reading.

http://skogli.no/nettverkskonferanse/

(and now I've made sure to back up the program... :-P )
 
Esther12 said:
Do you know why this person is in charge? Have they engaged in any meaningful debate about the way that they're pushing LP?
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Actually, the first leader of the competence service was superb. Very updated on research and clear that ME is a severe physiological disease. She didn't last long in that position though, I don't know any details about why. Then came another doctor for a short time which I believe was somewhere in the middle of the debate. She later told she was advised to leave ME as a field if she cared about her career in medicine. And then came dr. Helland from Wyller's team.

Wyller says that LP has elements of CBT, CBT has been proven to work for ME, therefore LP works for ME. I assume dr. Helland reasons the same way.

Helland was very eager when SMILE was published. And said to the media the results were exciting and that it's important the patients gets both LP and support from doctors.
Dagens Medisin 2017 - Dette er veldig spennende resultater
google translation: These are very exciting results
 
Snowdrop said:
It would not be such a bad thing to consider this as a researcher except for the fact that any research that is done with this model inevitably is poorly designed and executed. If it was further investigated properly we could probably dispense with it and move on. I would be interested to know what a proper trial of this would look like.
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Well, Wyller did do a study on treatment with Clonidine Disease mechanisms and clonidine treatment in adolescents in chronic fatigue syndrome: a combined cross-sectional and randomised clinical trial which turned out negative. I haven't looked closely at details on this study, but have not heard any critique concerning the quality. I don't think prof. Wyller adjusted his hypothesis after the negative trial.
 
Kalliope said:
Actually, the first leader of the competence service was superb. Very updated on research and clear that ME is a severe physiological disease. She didn't last long in that position though, I don't know any details about why. Then came another doctor for a short time which I believe was somewhere in the middle of the debate. She later told she was advised to leave ME as a field if she cared about her career in medicine. And then came dr. Helland from Wyller's team.

Wyller says that LP has elements of CBT, CBT has been proven to work for ME, therefore LP works for ME. I assume dr. Helland reasons the same way.

Helland was very eager when SMILE was published. And said to the media the results were exciting and that it's important the patients gets both LP and support from doctors.
Dagens Medisin 2017 - Dette er veldig spennende resultater
google translation: These are very exciting results
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Helland was in Wyllers team even...?!

I didn't know that, and had forgotten about the others in the same position before her - or I wasn't around at that time probably. It sort of felt like I had a blank space trying to tell the history :-P

That means the papers Helland/Wyller wrote in 2012 and 2013, probably was before she took over the competence service?
 
Looking for something else, I stumbled over these older interviews. From around the time when the 'knowledge center' was established, 2009. A trip down the memory lane? :)


Ellen Piro - founder of the ME association - Do the academic communitites behind knowledge about ME have a hidden agenda? (norwegian - bing english)

"-We put forward research studies, and patient surveys, and they would not include in the report. If there is a hidden agenda here, we ask, says Piro."

"-I know that there are many well-intened physicians, but they are confused by the conflicting information and do not know what is right. That disease is disputed, really when a British psychiatrist named Simon Wessely and his associates came with their views on the disease. This spread throughout the world, and his view of the disease is strong in Norway."


Vegard Bruun Wyller - leader of the group authoring the report - "This is nonsense." (norwegian - bing english)

"-Wessely is one of many international researchers who do a lot of good research."

"-it is well documented that cognitive treatment has a positive effect on the disease. This is also a bit foolish to disagree with. It does not help for everyone, but we know that it is good help in cognitive treatment for the healthiest half of the patients. It also helps children and adolescents, and we believe that everyone should be offered this."



Remember, this is 2009 - no wonder he has problems seeing any fault with the pace trial...


Simon Wesseley - some of his research criticed by Piro - "Mighty bored." (norwegian - bing english)

"I am mighty tired of this nonsense that is being scattered by a small number of intolerant activists who do not share sight with most of those who suffer from the disease," said Simon Wessely, in response to the M. E Association's criticism and questions about a hidden agenda.

"Two things. One is that it is true that doctors are not very good with patients who have symptoms and malfunctions, but where it is not possible to uncover any explanation of the disease image. They are sick, but they have no disease. No findings on physical investigations. No shadows on the X-rays. No unusual blood tests. Psychiatrists are on the other hand accustomed with such patients, similar to the general practitioners, but other specialists are not accustomed to this issue. "

----

No other health professionals/doctors/researchers seems to have been interviewed at the time. I did not know Wessely had been throwing his weight in on the ME-debate even here.
 
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inox said:
I did not know Wessely had been throwing his weight in on the ME-debate even here.
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I remember him on the front page of the newspaper Dagbladet (I think it was) some years ago before he went to Afghanistan saying he would feel much safer there than working with ME. I was sick to my stomach seeing my patient group described in such way. Tried to find that article now, but the only thing that surfaced was another article from Dagbladet where he was asked by Norwegian health authorities to evaluate the emergency preparedness surrounding the terrorist attack 22. July 2011.
 
inox said:
doctors are not very good with patients who have symptoms and malfunctions
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Wat? That sounds like the literal description of a medical doctor....

Oh, he means "symptoms", as in imaginary symptoms that don't actually exist. Yeah... I'm not so sure about the whole "using the same word to mean two different things" thing.

They are sick, but they have no disease
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andypants said:
I know, I just don't want to go. I'm too ill to benefit (and to travel there at all, really) and I have been ill for some years now so I have mastered pacing, energy economization etc a long time ago. I also don't at all like being away from my partner for that long, we have a routine that works really well and I am always most happy at home. I'm sure the stay can be good, it's just not something I feel like I need, want or will benefit from and I would never have chosen this for myself at this point.

My GP has always agreed that I'm too ill to go, but now there's only 6 months left of AAP and NAV made it very clear that without a rehab stay my disability claim will most likely be denied. I could challenge that, but as you know that would mean 6-12 months without income while they process the complaint, plus the loss of my monthly disability insurance payout (which is dependent on NAV agreeing I'm unfit for work).

The seminar or whatever it is just makes me even more annoyed and frustrated that we are still being made to do stuff that is not good for us.
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Oh dear, talk about being put between a rock and a hard place! That sounds like a massively unfair system.
I suppose you can't even take this involuntary opportunity to engage in a spot of education during your stay, telling them that LP=BS, because that would label you as uncooperative...
I hope things will go better for you than you fear.
 
Ravn said:
Oh dear, talk about being put between a rock and a hard place! That sounds like a massively unfair system.
I suppose you can't even take this involuntary opportunity to engage in a spot of education during your stay, telling them that LP=BS, because that would label you as uncooperative...
I hope things will go better for you than you fear.
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It will most likely be totally fine:) this is one of the most popular rehabs for PwME, they even house us in sound proofed rooms. The rehab is great for many people who are at the milder end, very new to the illness or who have kids and need a break. Of course, legally no one can make you go there if you’re not well enough but that doesn’t mean much when you risk loosing your income.

Anyway, I think going is a lot easier than dealing with the consequences of not going:) and they do send you home early if it turns out you shouldn’t have been there to begin with. And it does help the process towards disability a lot, it’s one of the many boxes that should be ticked before you apply.
 
Snowdrop said:
Actually, the link in @Kalliope 's post #7 about sustained arousal is worth looking at and considering. It is attempting to integrate a physical cause and perpetuating factors with a psychological cure.

I don't think sustained arousal is the cause of ME but the linked paper is (at least to me) the most sophisticated explanation I've seen of this theory. It does not however include PEM as part of the symptomology.

It would not be such a bad thing to consider this as a researcher except for the fact that any research that is done with this model inevitably is poorly designed and executed. If it was further investigated properly we could probably dispense with it and move on. I would be interested to know what a proper trial of this would look like.

They make no explanation for how a psychological therapy fixes sustained arousal nor any details of how specifically the various relevant factors create the condition.

Given that, I think the only way we can show that they are on the wrong track with believing in their cure is to show that there is not enough real data to back up their claims and given what many patients report regarding harm when forced to do more or disregard their symptoms this cannot stand. But also, they need to provide some explanation of how they believe music or LP can change or fix what they describe as SA. It makes no sense at all to me.

Also, given that a doctor may explain sustained arousal to someone with ME I would not be surprised if someone newly ill found this compelling and reasonable although that wouldn't extend to how the medics think it should be treated but no doubt most people would not question this.
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I had a look at this.

At first glance it does sound plausible. According to this model, "stress" is any event or occurrence that is unexpected, from suddenly feeling a little too hot, to seeing a lion running towards you, to losing a loved one. This unexpected occurrence induces an "arousal response", which can include autonomic changes (changes in heart rate, blood pressure, etc), endocrine changes (production of adrenalin etc.), changes to the "somatic nervous system" (which means taking voluntarily action, like moving to a shady spot, or running from the lion), and also cognitive changes. The changes are described very loosely. I think that's the aim, so that you can pretty much cover any sort of change to any sort of environmental challenge.

The idea is that once the "arousal response" succeeds in resolving the mismatch between expectation and reality, it is switched off.

If the situation can't be resolved, then a state of "sustained arousal" occurs. Again, because the idea is so loose, just about any long-term change to any bodily system - immunological, endocrine, neurological, whatever - can be explained as an example of sustained arousal.

The authors then apply the idea to CFS: basically, they list all the abnormalities that have been reported in CFS and reframe them all as indicators of this state of "sustained arousal".

Then why are CFS patients in a state of sustained arousal? Well, there needs to be a major precipitating stressor (which can be either psychological or physical like a long-lasting virus). But only vulnerable people develop CFS - they have a predisposition (inherited or otherwise) that favours certain personality traits and tendencies to negative thinking. And then the vicious cycle gets reinforced by - you guessed it - learning. The person learns to associate the "state of sustained arousal" with exertion and then avoids activity.

It all gets very loose and vague after that. There are references to "sensitization" and to "functional alterations in relevant brain stem areas". Its like a shopping list that includes every vague thought anyone has ever had about the causes and features of CFS.
 
Woolie said:
Its like a shopping list that includes every vague thought anyone has ever had about the causes and features of CFS.
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Certainly a shopping list but to me it fails to deal with any of the real issues of ME/CFS. It says nothing about PEM, nothing about unrefreshing sleep, nothing about orthostatic intolerance (which is not a feature of arousal) and so on.

The magpie-like collection of bits of 'evidence' mostly gleaned from speculative reviews about as bad as this one reveals a lack of understanding of evidence quality. References to oxidative stress, long lasting infections and Th2 responses says it all really.

About the only piece of data we are presented with is that Wyller found PWME to have higher sympathetic activity than normal controls on clinical testing. I would not be at all surprised if PWME had higher sympathetic activity than normal people when experimented on by Dr Wyller. The psychological context of the situation would be completely different for the two groups.
 
Dolphin said:
I thought I would post this somewhere. I am not recommending the website:
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It's sad, isn't it? And unbelivable unscientific. The leader for the norwegian competance service for ME does this to, actually refer to Recovery Norge in talks about long-term outcomes. The slides are posted on their own webpage.

I can't even begin to express how crazy this is, without winding myself up in an anger :-/
 
It would be good for us if these people went all-in on the Lightning Process. Then it would be obvious to almost everyone that they are out of touch with reality.

They live in a fantasy world where thoughts can cure or cause disease, and see themselves as pioneers that have special insight. When it's all just a failure to properly control for bias.
 
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