News from Scandinavia

Short radio segment and article about a plans of a new pain unit in 2021 at a hospital in Gothenburg, Sweden. The ward will be for patients with ME or fibromyalgia. The idea is that the unit also will be doing research.

The article doesn't mention who is going to lead this work and whether their approach is psychosomatic or not.

P4 Göteborg - Ny smärtenhet vid Angereds Närsjukhus
google translation

 

https://opengov.360online.com/Meetings/vgregion/File/Details/2254234.PDF?fileName=Protokoll västra hälso- och sjukvårdsnämnden 2019-12-17&fileSize=1464054

I wrote a bit about it earlier here.

 

Henrik Vogt and Vegard Wyller were not happy with this article. ABCNyheter has published a new article now where Vogt and Wyller arguments why they believe Olav Lægreid is wrong.

Wyller:
- What I react to is the claim that cognitive therapy has no effect and that Lightning Process (LP) is a form of shamanism. Cognitive therapy works well in many patients with chronic fatigue and with ME. Some become completely healthy, others become significantly better. You can get completely healthy, he tells ABC News.

He explains that cognitive therapy and LP are variants of the same.
- It has gradually been shown through research that it has an effect. Scientific studies have been good. There are many on cognitive therapy. There are no drugs that have shown effect on ME.
....

- But LP is today not approved and is not covered by the Norwegian health system. Are we lagging?

- LP has poorer research grounds than cognitive therapy. We are lagging behind in the research, with more research we will eventually be able to show better what the effect is. Once the documentation is in place, the public will be able to approve the LP and cover the treatment, the professor responds and adds:
- But we have come to the conclusion that if patients would like to try LP then it is fine.
...

Henrik Vogt in Recovery Norway believes that Lægreid is associated with a movement that does not want this type of story told by its members.

- They do not want the stories of those who have become healthy to come forward, and who have become healthy through methods such as mindfullness, Lightning Process and cognitive therapy or other such techniques. That is the motivation and reason for this attack. It is a movement that does not want the stories that have been healed through Mindfulness, LP, cognitive therapy or other techniques to emerge. That's because those stories don't fit into the narrative they want to promote.

- But do you agree that there is currently no cure for ME documented through research?

- There is not enough research to investigate whether one can cure ME with such methods. It has not been investigated enough, but the stories of those who have recovered indicate that it is possible. There are also two, three references that indicate that it is possible to recover from cognitive behavioral therapy.
...
Lægreid states that Lightning Process is an alternative treatment that is not a medical profession, from serious studies, to say that an effect can be shown on the symptoms of the ME disease itself. And that the program can be directly harmful to ME patients.

- It is wrong that there is no good documentation, says Vogt, referring to a 2017 UK study where the method was tested on young people with ME.

....
- What is said and said on the LP course is broadly compatible with a scientific image of the body, compatible with a well-known scientific worldview. It is not alternative in the way that Lægreid tries to portray it as.
- LP is not performed by health-care personnel, but that in itself does not make the method a more or less alternative purely professional, says Vogt.

ABCNyheter: Professor: Å si at Lightning Process er sjamanisme, det er vissvass
google translation: Professor: To claim Lightning Process is shamanism, is pure nonsense

ETA: One can comment on the article on Facebook

 

What the fuck.

Psychologists like James Coyne, Sinéad Conneely, Brian Hughes that have no stake in these therapies call it pseudoscience and worse.

 

I don't do Facebook but it would be fun to respond to this somehow. The UK NICE committee was told in no uncertain terms that the evidence for CBT in ME is unusable and if indicating anything at all it is no effect. The Lightning Process trial was considered too poor quality to even comment on. Vogt and Wyller are making it clear that they have no idea what they are doing.

I am tempted to suggest that:
Henrik Vogt in Recovery Norway is associated with a movement that does not want Lægreid's type of story told to its members.

 

This is completely ridiculous. To say that there has not been any research when those treatments have been used in practice for 2 decades in some places. We are beyond trials and studies, it has been a complete and total failure in practice long enough that those trials and studies are irrelevant by now. First of all it's false, but even pretending otherwise, what does it say then that those treatments are the standard of care if there has not been enough research to conclude anything? There is enough evidence to recommend them but not enough to conclude whether it actually works as advertised? What is this nonsense and how do such fools even have a medical license?

Nevermind that PACE is literally the thing that people point to when they say it's been proven by research, a pragmatic trial that is still used to argue over etiology even though the underlying assumptions are wishy-washy and rarely even acknowledged. And the awkwardness of promoting LP despite there being no trial on it while also defending SMILE, but still insisting on anecdotes.

While nothing is preventing them from raising the funds themselves and doing their own studies and trials, they are very cheap to do and have been done for 2 decades on other psychobabble crap with zero reliable evidence to show for it, or even against it since they are so poor and unrepresentative nothing can reliably be concluded, which only leaves that a burden of proof has never been met. Though by all means please fund your own LP research and continue to show your intellectual bankruptcy.

Good grief this is such a mess of bad faith arguments and ideologically-stunted fallacies where reality does not even factor in at all, only the voices in their heads.

From the "do they ever hear themselves talk? no they clearly do not" file:

At some point homeopaths and other alternative medicine practitioners will start yelling "OH COME ON! Why can't we do that when they can?" and start making a lot of people very awkward about applying their own standards as actual standards, not exemptions from norms just because they want the outcome to be true.

 

In a radioprogram about ME on Monday (summary here) prof. Kristian Sommerfelt said ME patients are often already practicing cognitive behavioural therapy by themselves. They don't focus so much on symptoms, but are far more interested in getting on with their lives again.
Professor Wyller objected and said it's wrong to start up with cognitive behavioural therapy by oneself, it was downgrading psychological competence. Today however Wyller says to ABCNyheter that they've arrived to the point that if patients would like to try Lightning Process, that's fine.

 

Shamanism must be involved. There can be no doubt. How else can you explain that a measly 79 anecdotes instantly disable any critical thinking faculty in even presumably somewhat science-literate health officials? And that journalists are compelled into blindly believing that citing those anecdotes makes for balanced reporting?

Back of an envelope calculation: if 0.2% have ME in a population of 5 million that makes 10,000. If 5% of them recover naturally that's 500 recovered patients. It's perfectly possible that 79 of those 500 just happened to have been doing LP or similar, given how much it is being pushed on patients, and that they then (mistakenly) attributed their recovery to that. There are also reports on the Internet of people attributing their recovery to drinking bleach and any health authority - quite rightly - would not link to that but issue a warning instead.

You can argue with the precise figures and percentages in my rough calculation, and also point out that the figures don't even take into account the issue of misdiagnosis (i.e. all those diagnosed with ME who've never experienced PEM in their lives), but the point remains the same: 79 recovery stories are no more than can be expected from natural recovery and therefore tell us precisely nothing.

The other arm to the argument of Vogt, Wyller & Co is always referring to the same studies we know to be seriously flawed but that probably sound convincing to most people, just because their published studies. Which is understandable from the general public but journos and health professionals and officials should have a more finely tuned BS detector. Since they don't, we really need to get those studies retracted!

 

I believe one of the reasons lawyer Lægreid compared Lightning Process to shamanism is due to an ongoing debate in Norway about the darker sides of the alternative world. The princess has a new boyfriend, an American shaman. He just got a book translated to Norwegian where he among other claims that cancer is caused by an inner wish to die, also in children.

This obvious example of patient blaming spurred a necessary and long time coming debate about alternative treatment in general. I think drawing a parallel from this shaman to Lightning Process is spot on.

The article with Wyller and Vogt has now been updated with comments from lawyer Lægreid. He was accused by Vogt of being associated with a movement, which he dismisses. He says that his criticism is among other things that the Directorate of Health has seen Recovery Norway as a patient organisation. But that Henrik Vogt himself says it isn't. Also that Lightning Process is alternative treatment, which Henrik Vogt confirms. In other words Recovery Norge doesn't belong on a website to the Directorate of health.
Further Lægreid says that if Wyller disagrees with the Directorate of Health that currently there are no treatments for ME as said in the national guidelines, then that's a debate between Wyller and the Directorate.

 

Press release

 

Thank you @mango Still none the wiser regarding their approach to ME. Dare we be hopeful when they write "ME - Myalgic Encephalomyelitis (previously called Chronic Fatigue Syndrome)"?

 

And anyway fact is that no matter what happens, even if all BPS research were dropped, none of the cognitive stuff requires a referral or a prescription, aren't even delivered by medical professionals, so it literally would change nothing to availability. Ignoring symptoms and pushing through is pretty much the thing people do for as long as they can, it doesn't need to be blessed by some priest of psychobabble. They can even fund all the research they want all by themselves from private funds, it's so cheap and if it works people will line up to fund it. By this point there must be a lot of LP practitioners in Norway, I'm sure they'll be enthusiastic to fund it all themselves, along with all the well-to-do MDs who keep promoting it because it totally works. Right? Right? *crickets* *tumbleweeds* *tumbleweeds actually made of crickets*

Which makes the case that it's nothing to do with the patients, this treatment model has been and will continue to be available for all, as it has for the last 30 or so years and as it will continue to be until CBT loses its shiny overhyped status anyway and the next psychobabble fad comes along. Even if all recommendations would drop, it would not stop a single person from doing a bucket list of all those treatments, then becoming trained on those treatments and making a career out of those treatments, LP-style. In fact that's already the case so that's settled.

But the idea that CBT or cognitive training in general is something special is ridiculous. It's not some complex expert discipline, hell CBT certificates are available for, what, 2-3 hours? Literally the only people affected by it would be the cheerleaders of this model, for the patients it would not change anything at all, we are already years into that paradigm.

 

Thread

https://twitter.com/user/status/1207601445454917637

 

oh dear god

@mango 's twitter thread is from an investigative journalist, Josephine Freje. She's been tweeting while sitting next to a severe ME patient all day who has just been discharged from an institution where she's been for two years and where she's been close to family and friends. She is going to be taken to another institution far away, but this new institution can't guarantee the kind of bed and lifting equipment she's dependent on. She received the message about the move just yesterday.
She was discharged at 11 o'clock and been waiting for transport that hadn't been arranged for. Then a taxi came, but her family can't use lifting equipment, they need a key to the room it's at, but don't even know how to use it and no-one can help them. The personell are not allowed to help her anymore, not even for a bathroom visit. She's given no information, no food, no water. They hope the night personell will help when they get on duty.

 

Article in local newspaper.

It's paywalled, but the ingress says:

Severely ill Christin is moving - 20 miles away from her family

Christin Andersson is severely ill and can't move out of bed without assistance. After three years at a short term institution in Gothenburg she was about to be moved, against her will, to another place located in Småland. But the patient transport never turned up. Now the short term institution says they aren't responsible for her any more, and she receives no food or help to get to the bathroom.

https://www.gp.se/nyheter/göteborg/svårt-sjuka-christin-ska-flyttas-20-mil-från-familjen-1.21766943

 

The ensuing disciplinary proceedings should be interesting.

 

Nina E. Steinkopf - ME patient and blogger who initiated a petition against the Norwegian Competence Center for CFS/ME and their biopsychosocial approach which got over 7 300 signatures - has written about the article on lawyer Olav Lægreid's criticism of the Norwegian Welfare and Labour Organisation pushing ME patients into "treatments" as Lightning Process.

Here's a summary in English:

She tells about a video seminar by psychologist Nina Andresen that was held same day as the ABCNyheter-article. Nina Andresen says she got well from ME by her own means (diets etc). She is now working for the Norwegian Welfare and Labour Organisation (NAV) as an advisor and this week she gave a seminar called "Followup of users with CFS/ME" for employees at NAV.

She has been promoting alternative treatments for years and the Norwegian Competence Center for CFS/ME has used her as a patient representative.
In the seminar this week she pointed to Recovery Norge as proof that ME patients get well.

Further Nina E. Steinkopf writes about what Lightning Process is, and conflicts of interests from Recovery Norge.

In July 2017 came stricter rules for marketing alternative treatments in Norway. One can no longer use statements from satisfied costumers, surveys etc in marketing. Lightning Process coach Live Landmark was one of several alternative practitioners who received a letter from the consumer authority with the updated guidelines. She deleted the stories from costumers she had shared on social media.

Two months later the Facebook page to Recovery Norge was launched. A few days later there was an opinion piece titled "Listen to this who have recovered" from Recovery Norge in a newspaper. Among those who signed were:

• Helene Ragnhild Andersen, nutritionist and blogger with her own firm
• Bente Denstad, LP-coach
• Lise Eie, LP-coach
• Berit Frivold, LP-coach
• Geir Frivold, married to Berit Frivold/LP-coach
• Mikkel Funnemark, married to Live Landmark/LP-coach
• Kirsti Dahl Johansen, coach
• Anne Stine Kraabøl, NLP coach
• Live Landmark, LP-coach
• Gyrid Listuen, LP-coach
• Heddy Anne Torp Lund, coach
• Jan Even Raastad, LP-coach
• Møyfrid Tangen, coach

Shortly after stories from anonymous and recovered ME patients turned up on Recovery Norge's Facebook page, and now the same stories are shared on Live Landmark's pages via Recovery Norge. Apparently that's legal when done in this roundabout way.

In 2018 Recovery Norge wrote a declaration of support to the Norwegian Competence Service for CFS/ME with 50 signatures, including 8 from LP-coaches. The Norwegian Association for Lightning Process coaches has 9 members, 8 of them are members of Recovery Norge.

It's estimated that there are between 6 000 and 10 000 ME patients in Norway. It is not known how many of Recovery Norge's 18o members have had ME and are now back to school/job.

Nina E. Steinkopf then goes on to describe how the Norwegian Welfare and Labour Organisation has contributed to the position LP has gotten in Norway.

Among others she quotes a doctor who works for the Welfare and Labour Organisation, Georg Espolin Johnson: "Even though treatment of CFS/ME is not a part of the Welfare and Labour Organisation's area, the dysfunction following the illness is very obvious in our system. The powerlessness in not being able to do more than observing the suffering, is a strain for many employees. The Norwegian Welfare and Labour Organisation can and should contribute in spreading the testimonies from Recovery Norge to GPs".

Nina E. Steinkopf: Når NAV pusher sjamanisme
google translation: When NAV is pushing shamanism

 

https://twitter.com/user/status/1208001432542162945