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

Skogli Rehabilitation Center has worked with ME patients for several years.
It's disturbing to see their program of an upcoming Network conference for health personell working with CFS/ME in March. Lillebeth Larun seems to still be acknowledged as an authority in this field and why on earth would they recommend one of Crawley's paper on Lightning Process?

Here is the program in original version.

I have translated the main part:

Latest news from CFS/ME research - by Lillebeth Larun PhD and physiotherapist
CFS/ME - What do we do when the patient is sent by the Labour and Welfare Administration? - by counselling doctor in the Labour and Welfare Administration/GP Njål Flem Mæland
Handling CFS/ME with ACT as tool - Julie Aasvik Phd in neuromedicine

Lunch with networking

CFS/ME and emotional reactions - specialist in psychology Nils Erik Haugen

They recommend following literature as preparation:
Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised control trial
https://adc.bmj.com/content/103/2/155

Fatigue in adults with post-infectious fatigue syndrome: a qualitative content analysis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4662830/

 

I’m up for a stay at Skogli (not by choice) and chose them because of the good reputation they have among PwME. This does not make me feel any better about being made to go there.

 

I'm sorry to hear that, @andypants I understand your reluctance

 

@andypants Skogli is not that bad, I was there fall 2018. I had a good “vacation” from my normal surroundings there, and I managed to attended most of the classes. That meant I had to have the meals in my room, but so be it. The place, the rooms, the people and the surroundings are great. What theory behind the illness they seem not to lay so much weight on, and I didn’t either. The lessons were interesting anyway.

 

I'm guessing Skogli itself isn't the main problem with this program - look at the co-hosts. Among them 'the national competence service'

 

Why is this 'national competence service' so incompetent, and repeatedly pushing LP?

 

The leader of the competence service, dr. Helland, used to work with prof. Wyller who believes ME is a form of sustained arousal. He has a study now on music therapy as treatment for ME and applied for funds for doing a study on Lightning Process as well. The latter didn't receive funding, which caused quite a stir..

 

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.

 

Do you know why this person is in charge? Have they engaged in any meaningful debate about the way that they're pushing LP?

 

Yeah, that's the big question, isn't it? I've mentioned before, that we have a 'LP-problem' here. It's not everyone - obvious, as there is also very good research going on - but there is a rather deep divide between some parts of the 'health services'.

The norwegian ME-association was established in 1987, in 1995 they got the right to long term disability for ME patients. I was not around at that time, but doctors startet to know about ME, with even less information and help in how to manage then now.

Then came LP...

Around 2006/2007 it really hit the media, one story after the other. Live Landmark was one of the first people to go to London to take this new 'miracle treatment' as it was framed as - and who could deny the stories of happy people claiming to be healed? So this became the main story health professionales heard about ME - 'isn't there something called LP that can help with that....?' And that established the belife that ME is something benign, easily fixed, if you just put your mind to it.

Landmark trained to be the first norwegian LP-coach, and road in on the back of this media attention, and started amplifying it.

Then, in 2007, Wyller joined in (or maybe a bit before that?). He got his PhD based on the 'sustained arousal' theory about ME that year. His theory about ME fit like hand in a glove with LP - Wyller and Landmark soon stood on the same side in public debates, often only with a representative from the ME association against.

Wyller gave LP the flare of beeing a respectable therapy. He explained how he thought ME to be 'stress-responses', that the body didn't manage to turn off again - but how the magic of LP could fix that, by training your brain to turn of these unhelpful 'stress-loops'. The 'adrenalin-loops' of Phil Parker seemed to fit very well with his own observations. And doctors bought into that - an easy fix is appealing, isn't it? Even some health professionals educated themdselfs as LP-coaches, and NAV (work and pension) pushed people to do LP.


Why all this talk about Wyller? We often don't take his work to seriously, and as he is a childrens nevrologist, not someone adults with ME have to deal with that much. But he is actual influencial. He is head of his department, have been involved with the norwegian medical association and their journal, written medical books used for theaching etc.

In 2006 what was then 'kunnskapssenteret' (=knowledge center), where Larun worked, issued a report on the situation for ME in Norway - Wyller was leading the work, Larun one of the co-authors. 'Kunnskapssenteret' was around the same time included in the now 'National institute of public health', also the home of Cochrane Norway. The ME association didn't signe the report, and left the work in protest of the direction it was taking.

In 2012 'the competence service' came to life, lead by Ingrid B. Helland. It is situated at 'Rikshospitalet' - the same place as Wyller is. In 2012 and 2013 they co-author papers on ME, autonomic dysfunction:

https://www.ncbi.nlm.nih.gov/pubmed/22436201
https://www.ncbi.nlm.nih.gov/pubmed/23388153

Wyller is not in any obvious lead role in this picture, but he very much influences a part of the health professionals working with ME. Also, for years he was in the official role as knowedgebase for ME in children. There where rumours about him/his ward recommending LP for children. Wyller and Helland both made positive statements about the SMILE-study, in the medical journal.

All the way, Landmark have been around - invited to talk at arrangements by the association for medical doctors etc. When Landmark have made more or less outragous claime about patients - that health personell can't really say, Wyller, Helland and others have sort of backed her up, by refering to (low quality) research on ME patients and trauma, personality etc.

It's an entagled mix...

So when the Stubhaug study came out, this is what worried lots of patients - that it would be taken seriously despite the low quality, because the seemingly good results fit so well with this narrative. An intensified self-help course can fix ME-patients, if they are just 'motivated enough' :-/ just as LP

This got long... And I'm sure things are missing from the story - but the main - LP isn't really controverial or even thought of as alternative treatment among a certain segment of health professionales And they use research on cbt/get to back up their claimes. Helland seems to be among them.

So when NAFKAM (national research into alternative treatments) decleared LP to be alternative treatment a few yers back, that was actually sort of a win. Also, it might seem obvoius to non-norwegians, but when the ME association got a statement from the minister about NAV was not to push people to take LP, that was also important.

 

Thanks. Interesting that Larun had been working against patients for so long. Maybe that's relevant to the recent complaint about her work and the lack of patient involvement? I wonder how she ended up doing the Cochrane review?

 

You have no idea how hard it's been to get any meaningful debate about LP here... Or you might, reading my last reply

The article about Stubhaugs study for instance, where Tronstad and Sommerfelt also shared their opinion about it? Noticed how careful they where to point out that some people might have benefited from the treatment, etc? Not only patients have learned to debate in a harsh climate... They made sure to include that, so not to open for 'attacks' from doctors/researchers with a strong psycosomatich view of ME, recovery Norge etc.

Here is an example, of Wyller critizing Fluge/Mella, for scaring patients away from treatments that might help them, when talking publicly about their research findings - making patients think there is mainly something physical wrong with them. And then recommending LP.... In the journal for medical doctors.

https://translate.google.com/translate?hl=no&sl=no&tl=en&u=https://tidsskriftet.no/2017/12/kommentar/ukritisk-medieopptreden-av-me-forskere

For patients to challenge this view about LP, have been near impossible :-/

 

Hm, hadn't thought about that? She and Brurberg isn't on the earlier versions, they seem to have taken over in 2015?

For Larun, my guess it's her being a physiotherapist, that made GET/exercice theraphy seem the obvious answer. She have written articles about ME, both diagnostic and treatments from before 2011 (pro-PACE), and several articles about ME and exercise in 2011 and after.

Overview on her employer-page: https://www.fhi.no/en/about/about-n...ealth-technology-assessments/lillebeth-larun/

Someone in the Cochrane review-group could have noticed her writing....?

 

That she'd already been involved in a report that led to patient groups walking away when she was given this position of authority at Cochrane seems like another indication of worrying attitudes to CFS patients at Cochrane.

 

How widespread is quackery within medicine?! Why does it seem to be everywhere? There is no amount of maths or linguistic gymnastics that will make arguing how many angels can dance on a hairpin fall within the realm of science. There is absolutely no shortage of serious research paths, why is there so much damn focus on ridiculous ideas that can't even be tested for?

 

I'd say it's probably the reason she was given the go when she applied to do the review. Whatever Tovey might say, of course placing the disease within the common mental disorders means exactly that. The whole thing started from the conclusion from the late 80's and worked its way to fabricate the evidence.

Once the decision to equate ME with hypochondria, or whatever personal variation people choose to believe, there was only one destination in mind for H.M.S. PACE: rock bottom.

 

Yeah.. But, on the other hand, I'm not sure they would have known? If they where recruited by the protocol authors, they where Oxford and Kings College? Unless Larun herself mentioned it, how could they know? I'm not sure if it got any publicity at the time, but if it did, would have only been in norwegian newspapers. And I don't think there was any announcement of Larun/Brurberg joining the review team....?

Not that it necessarily would have been seen as s problem by that review group....

 

But that's not really how Cochrane work, even if I agree with your sentiment. It's not an ordinary top-down organization, where Tovey made the decisions of how things where to be organized and who to do the review.

Cochrane is, and even more so at that time, a bottom-up organization, edit: with self-governing review groups. So any disease that isn't covered by a group is more or less up for grabs. And the 'common mental disorders' group claimed ME, when no-one else was interested. Then Tovey wouldn't have any reason to interfere with that.

Also, we don't really know if she applied to do the review, or how she got involved. What we do know - it was not Larun that wrote the protocol, or the first version. The original authors where UK-based.

I wasn't really implying that Tovey had any finger in the game, but rather the PACE-authors and/or the UK bps-crowd, seems to have been pulling strings, to get her involved. I've got no proof of that though, so shouldn't really speculate to much.

 

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.

 

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?