Norway - 2 comedy podcasters cause controversy by misrepresenting ME/CFS, October 2022

Disgusting

 

That's horrible.

The "focusing too much on symptoms" bit needs to be fought against hard. I've done so many fun things that made me completely forget about my illness, only to get the exact same PEM afterwards. Heck, I didn't even know I was ill for 3 years, I thought I was just having executive dysfunction due to my autism. But trying hard to ignore my symptoms didn't do squat. There were still many, many days it took me hours to get up and brush my teeth.

 

Is this our Godwin? It should be anyways. If there's anything I've learned from a certain propaganda-war recently won by Shibu-dogs in various outfits is that you just meme them to shit instead of engaging their bullshit.

 

This has received quite some attention and the comedian did not come out well from yesterday's TV debate. He's name is trending on Twitter with a lot of criticism. Nina E. Steinkopf, who was the other part of the debate was excellent. I will try to do a transcript of the debate in English, but it may take some time.. The comedian/podcaster is part of a new official committee about women's health. In the same committee is also professor Kennair from the much debated Lighnting Process study.

 

It was horrible stuff, this podcast, initiated by Harald Eia, a legend in Norwegian comedy. But this was not particularly funny.

He started by summarizing in four or five sentences, it’s women, emotionally unstable, could be a bad marriage, conflict at work, whatever, - then not able to distinguish what’s what, ending up with ME? All the really pathetic cliches.

Then trying to defend himself in this radio program yesterday, like I’m a comedian, also claiming that I’m a really curious person, so I wonder why the climate is so harsh. Ok, but instead of doing anything proper at all, he just lashes out. Really disappointing from someone I thought was a lot smarter. But it was only one-sided rubbish. The “performance” by Eia in dax18 yesterday. Ooh, my god. It was really embarrassing for everyone listening.

 

So this all started with a podcast with the comedians Harald Eia and Tore Sagen. Harald Eia is also a sociologist and has made some TV programs with a combination of entertainment and information. He's also been host of "Brille", a Norwegian copy of QI, among many other things.

I've never heard any of the podcast episodes to Harald Eia and Tore Sagen. But read a facebook post to Frøydis Lilledalen, an ME sufferer, psychologist and author who was devastated after having been interviewed in their podcast about ME and initially thrilled of the opportunity to share information. But she had not been told of the context, which was that Harald was sending his "commando soldier" Tore into dangerous and difficult situations, as calling an ME patient on the phone (which they compared with calling ISIS), so clearly playing on the myth of this patient group as dangerous militant activists.

Apparently Harald Eia and Tore Sagen have presented ME in the podcast as psychosomatic and an illness people with neuroticism can develop.

Yesterday this was one of the themes discussed at the national broadcaster NRK in a debate programme with journalist Sigrid Sollund as host. ME has been a topic in her programme before, so she has a bit experience in what main topics in the ME debate are.

Here is a transcript of yesterday's debate. (My apologies for any spelling mistakes, grammar mistakes and/or inaccuracies):

Part 1:

Host Sigrid Sollund:
The comedians Tore Sagen and Harald Eia have upset and angered many ME sufferers with their latest episode of “Tore and Harald’s podcast”. In this podcast Eia tells what doctors have been saying to him about illness mechanisms behind ME, that is that many ME sufferers are stuck in a pattern where they interpret bad feelings as physiological, even though they actually can be caused by things as an unhappy marriage, or bad circumstances at work.

We have Eia with us in studio, but first to one of those who have reacted, Nina Steinkopf, you are an ME sufferer and a writer and runs the blog ME-livet. Which impression do you think this podcast episode gives of ME sufferers?

Nina E. Steinkopf:
I think it’s sad that Eia contributes to misinformation and stigmatisation of a patient group who is already in a very difficult position.

Host:
How is he doing that?

Steinkopf:
First of all, what he’s saying isn’t true. If Eia, who is a science communicator had checked his sources, he would have discovered himself that what he is claiming isn’t true.

Host:
What is he saying that isn’t true?

Steinkopf:
It is not true that we are hypochondriacs. It’s not true that we lack emotional insight and have low mentalisation ability. It’s not true that we are prejudiced against psychological illness. There is no scientific documentation supporting such claims.

Host:
If we take a step back here, Harald Eia, comedian, host, sociologist. What did you want to achieve with this?

Harald Eia:
We are making an entertainment program and I have a big weakness in my soul. That is when I hear about a professional field with some views that are very controversial, where many don’t dare to speak loudly about it, then I just HAVE to pick it up. I think it’s interesting and exciting. Because I don’t understand why it’s difficult to talk about.
In this case, in a series in our podcast.. In this case I had read that some ME researchers and clinicians think there are rigid standoffs. So they dare not speak up about what they believe, and such psychological approaches to it.
So therefore I wanted Tore to find out about this. Why is it so dangerous to have such a perspective where one thinks that there might be a connection between body and soul.

Host: But you say yourself that you are curious, and want to find out about things. But how openly are you approaching this theme when you present this as the truth, that people are more or less thinking themselves ill?

Eia:
Did I present it as the truth, that they are thinking themselves ill?

 

Part 2:

Host:
You said that you were going to tell the truth?

Eia:
I see. But that is because this is an entertainment program. So I’m sending my commando soldier Tore Sagen out, because I am in this context… It’s always hard to talk about these things.. But I have to do this. I will endure this… Because I am such a coward. I don’t dare to take this one, so I leave it to Tore to do it. So I give him a pep talk at the end that this is the truth, Tore, come on. But I do understand that there are no truth here. But what I do know is that there are many researchers and doctors who believe, if it’s not a lack of affect consciousness, that is you don’t quite understand.. your stomach hurts, why? But it could be like chronic stress activation, a lot of such things. Why is it so difficult to talk about? That is what I don’t understand. It was not my intention to hurt anyone at all. And I don’t think it’s the truth that I said. I’m sorry about that.

Host:
Steinkopf, there are still a lot of disagreement and uncertainty among the researchers. Why is it so provocative for many patients that someone is pointing to things like cognitive, psychological aspects?

Steinkopf:
First of all there isn’t that much disagreement about this. Internationally there’s quite a lot of agreement that ME is a multi systemic disease. There’s no research showing that there are psychosomatic causes for the disease. And I don’t believe there are that many who thinks this is difficult to talk about. Some of the reason behind my protest to what Eia is presenting as facts is that these are old myths which has led to ME patients not being believed, it has led to us being treated with methods that have made us deteriorate. We have not received the help we needed. Families with children suffering from ME have been reported to child welfare. And when Eia now, who is member of the council for women’s health, is pulling up these old myths, then his words weigh more and contribute to the continuation of these myths and the bad treatment for us.

Eia:
Ok, so what you mean.. Is it completely outdated, for the first? And secondly it is a burden to hear about these perspectives. Can’t you tell us.. Because the humour in this section is about me being a coward who is sending Tore out on an impossible quest. Because the ME sufferer and psychologist who he is calling, Frøydis, she is very well spoken. Tore is completely run over. He has nothing to say. She wins that debate.. Why it is hurtful for ME patients that we are saying.. is that what this is about? That it’s outdated or that it reminds of treatments that have been damaging. Is that it? I’m just interested in understanding.

Steinkopf:
These are good questions, Harald. Thank you for that. Yes, it’s outdated. Both American and British health authorities have for long concluded that ME is a physiological disease. And no, it’s not painful to hear about these methods, but most of us have had to undergo these treatment methods which made us deteriorate.

Host:
And then you are referring to the cognitive methods.. But Harald Eia, you said yourself in the podcast that you and Tore Sagen lack some personality traits needed in order to develop ME. What personality traits are those?

Eia:
Yes, Tore and I are guys who are very little anxious, for instance. This may be outdated, but that there is some connection with the personality trait neuroticism, that you easily get anxious, scared and worried and such things. There are more people with such personality traits that get ME, and other such illnesses..

Steinkopf:
(Laughs). It’s not true. It’s not true.

Eia:
That’s not true as well…

Steinkopf:
No, it’s not true. And another thing, when we ME patients are accused for being prejudiced against psychological illness...

Host:
Now you are referring to those who say that you won’t see the psychological component, is that what you’re thinking of?

Steinkopf:
Yes. It’s not correct.

Eia:
But why are there so many researchers who say the debate climate is so very rough?

Steinkopf:
Well, you have to ask those researchers about that. I’m very interested to learn what are your sources, what they are telling you and where this is from. Because I don’t recognise this.

Eia:
Another thing I’m wondering about..

Host:
But I need to be allowed to ask Steinkopf some questions too

Eia:
I have very good questions, Sigrid.

Host:
Ok, but you have to leave that for your own podcast. You say you don’t recognise that it’s a tough debate, but there are in fact, we see it too when we call people, there are many who avoid talking about ME. Why do you think it’s like that?

Steinkopf:
I belive this may be because there are some wrong information being served. And there are some professionals who are stuck to old prejudice and who refuse to absorb new knowledge. And it’s a bit about power and prestige and such things. I don’t know.

Eia:
I have been contacted by many lately. ME patients who are sad and angry and things like that. But also some ME patients who say: Please. Does it have to be such hard disagreement? I only want to get help. If it is so that the psychological perspective turns out to be fruitful, can’t we please research it, find out about it, talk openly about it. Do you agree with this? That we should be able to do this? Or is it not of any interest at all?

Steinkopf:
This has been tried out for 30 years, Harald. It has not worked. On the contrary we deteriorate because we are set on exercise treatment and we don’t tolerate that. So my opinion is that now when the biomedical research has gotten so far, why don’t we take a closer look on that instead?

Host:
But there are others who say they have recovered from such treatment and then say they are not believed. What are your views on that?

Steinkopf:
That may very well be. And I’m very happy for everyone who recovers, no matter the methods. Then we have all those who have tried the same methods who got very much worse. There are two sides here.

Host:
How do you think it is Harald, for someone who has been lying in the dark for years and then hear that you can just think yourself better?

Eia:
But is that what we’re saying, that it’s just to think yourself better? This is an illness. Once I had very much lower back pain and I was working at the Oslo University Hospital on another project. And then the doctor said to me that the pain you’re feeling now after 3-4 days is up here in the head and not in your lower back.
- No, it’s in the back.
- No, it’s in the head. There is a stress activation now that makes you perpetuate the pain. You just have to try to think that there are no cartilage or nerves squeezed.
And it worked. And it’s not just to say that you can think yourself better. It’s not that easy. It’s hard. That’s what I don’t understand why people so quickly jump to it being you own fault, and you can just think yourself better. But is that what cognitive therapy or what it’s called is about? That’s not my impression.

Steinkopf: But you can’t compare stress activation with ME.

Eia:
I see. But there are excellent researchers who, Bruun Wyller for instance in Norway, he is quite recognised. He claims this view

Host:
I don’t think we should start evaluating all the researchers..

Eia:
I just wonder if it’s so simple as you say. I have to admit I’m no expert on ME. But my impression is that it’s not so unambiguously as you describe it that it's completely off the table.

Host:
We have to stop.

 

Should also add that the other comedian, Tore Sagen, has his own podcast where he once interviewed Henrik Vogt about Long Covid and was presented with the usual from Vogt.

 

The newspaper Dagsavisen has an article about yesterday's debate with Frøydis Lilledalen, Harald Eia and the general secretary of the Norwegian ME Association.

ME-syk: Frykter stigmatisering etter podkast
google translation: ME-sufferer: Fear stigmatisation after podcast

- I was called by Harald Eia who wondered if I wanted "some difficult questions about ME and activists". I thought that maybe I could help clarify some things, add nuance or come up with new and relevant information, she says to Dagsavisen.

- Tore Sagen called me, and we spoke for about 25 minutes. I want to make it clear that I do not feel deceived. What was sad was that I thought I had a real chance to contribute something, and that Eia and Sagen were genuinely curious about ME, she says.

- I had prepared, and found research references, and answered to the best of my ability.

She was a little disappointed when she heard the finished programme.

- The clip with me has been approved. That's not what I'm problematizing. But I am surprised that they contribute to the prejudice and stigma that ME sufferers have had to deal with too much. My goal was to create less prejudice, not more. When the folk heroes Eia and Sagen present claims as facts, they legitimize a contested view of ME. While I had hoped we would soon be done with using "hysteria" as an explanatory model, she says.

 

Disabled people used to be shown in zoos. This isn't much different from this, just the medium has changed a bit and society is more prosperous, raising what rock bottom is for most.

I don't see a reason to do debates like this. There's no winning such a debate, it's purely for the entertainment of some and money from controversy for others. There are too many facts and details to answer in the rapid-fire format of a live discussion.

It's worth countering misinformation, but this back-and-forth format is not made for facts, it's made for emotional impact and we simply don't have any, the visceral disgusts people have against what they think are people cheating welfare systems, is too strong to be a counter to any goodwill.

 

Thought I'd see if Vogt had anything to say about this, given his connections to them.

Facebook's translated version:

https://www.facebook.com/HenrikVogt...14qHbbSnF1VhGyM4GH2hXKfgJBrV1ZXZxmY3eYPTQp7hl

 

I know it is Vogt's way of working, but a girl I knew with M.E. went to a faith healer that visited a nearby church and afterwards declared herself healed. I don't know for how long that held up as she was a friend of my girlfriend at the time and ending that relationship also ended any connection I had with the girl healed by faith.

My point is, you could probably find people that have found themselves healed by any number of interventions, be it faith healing, psychology, a range of supplements or anything else. It's not reliable evidence of any sort of underlying mechanism or better yet a stable way to treat that mechanism.

The reason trials are done is to find just that and a repeatable way of healing patients hasn't been found so far in any trials I'm aware of, least of all psychology. Against the few people that say they've been made better by CBT, GET or both you could pit hundreds if not thousands of people that have been made worse. Vogt seems very intent on ignoring those and promoting the view that did get better.

The reaction to Vogt's piece could be very short: that's not science.

 

I have been suffering for over 50 years and I am fed up of all this. It is time for the truth. The disease I have is caused by serious problems in the way my body works. CPET testing has shown that anaerobic respiration in our cells is damaged so we do not have enough available energy to for our bodies to work normally. This insight explains much of what makes me chronically ill.

There is no way that psychological treatment can cure this any more than it can cure cancer. Study after study has shown that attitude has no effect on outcomes for cancer patients. Biology just does not work that way.

The complex mental processes they posit as an explanation only exist in humans so if it exists it has to have been a very modern evolutionary change. Maybe... but the deep base of mammalian responses to disease much surely be of overwhelming importance.

From this, no one with the disease I have has been cured by psychological processes. The only explanations are

they became well spontaneously at a coincidental time,

the treatments incidentally allowed them to pace themselves so they have moved to a milder form of the disease

they had a psychological illness. (A different disease would have either of the explanations above for similar reasons to ME)

It is no more acceptable to say that modern psychological treatments can cure the bodily disease than it is that a standard modern car can fly. Not opinion just simple biology. Politeness and compassion for people who are suffering in a different way from us cannot be used to deny it.

edited for clarity

 

People that are suffering in a different way are generally given a different version of CBT. I've had both, one made me worse the other also made me worse. So the curative CBT and the "supportive" CBT. After that I honestly started to think that the whole thing from curative to supportive CBT is a sham. I've not got the evidence to back up my claim, but I'd be surprised if the evidence underpinning supportive CBT were any more solid than it is for curative CBT.

My sister-in-law is a psychologist and when going through her education she confided in me that all they were learning was putting labels on normal behaviour, which they then got to "treat". The woman that evaluated if I was lying for benefits concluded I wasn't, but she still offered me treatment for being shy when I was 13 years old. If she didn't have power over me she'd have found out how shy I was.

Unfortunately she did, I had to jump through all the hoops with her(psychologist) and later with a psychiatrist to still get denied my benefits on the basis of "being able" to work 45 mins in a confined space devoid of stimuli. The psychiatrist went along with the same bullshit she did after I pointed out to him that I was far from shy now btw. Even got a neat little "bonus" diagnosis on the back of that little story from my childhood.

If someone were to force a mass-retract from everything that was solely based on open-label trials with subjective endpoints I wonder what would still be left in the end.