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

[Sid]

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 Yes, it’s outdated.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.

I’m sorry but this simply isn’t true and it doesn’t do us any service to misrepresent the current mainstream medical opinion in the US and the UK which is almost uniformly hostile to us and holds that ME/CFS is a psychological issue. I presume this patient is making an appeal to authority and alluding to the IOM report and NICE guidelines but actually these documents have had a negligible impact on routine clinical practice and as we can all see there is currently a push to simply relabel existing CBT/GET services in the UK to avoid implementing the new NICE guidelines.

 

[Solstice]

I’m sorry but this simply isn’t true and it doesn’t do us any service to misrepresent the current mainstream medical opinion in the US and the UK which is almost uniformly hostile to us and holds that ME/CFS is a psychological issue. I presume this patient is making an appeal to authority and alluding to the IOM report and NICE guidelines but actually these documents have had a negligible impact on routine clinical practice and as we can all see there is currently a push to simply relabel existing CBT/GET services in the UK to avoid implementing the new NICE guidelines.

She is talking about health authorities and not about daily clinical practice though.

 

[Esther12]

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

Vogt got a reply from Sollund:

Sigrid Sollund
We can have many rounds in D18 about this, of course also with people who have recovered. This wasn't the only blissful debate in some way. We have to pick an angle every time, but together it can hopefully form some kind of holistic picture.

Vogt adds:

Henrik Vogt
Hi Sigrid Sollund! Thank you for the comment. It's fine. I think this is partly to do with habit. You are used to the fact that the patients are one voice, and preferably that it is the voice of the weak, and journalists (I have been) are not used to dealing with voices that both have a lot of power and have the role of the weak and vulnerable at the same time. The ME field is completely different. There is not one patient voice and the voice that is usually listened to is not representative of all.
It's not only here in Dax18 that this applies. This applies to almost all journalistic issues. There is a kind of resistance in calling up the second patient voice at the same time. Sometimes it is because it does not fit in the story of a patient it is a pity that is not believed and not that there is no hope for, etc. (does not fit in comfort and carry-journalism), but other times I think more it just does not fall into people. Or get used to it idk Hearing very little from journalists anyway, regarding how interesting this voice is. This doesn't only apply to journalists either. It applies to the bureaucracy, politicians, health care. You would think everyone was interested in those who have moved on, but it's going slowly (although some are happening).
But well.. looking forward to this voice coming out more.

Henrik Vogt
Sigrid Sollundps.. and then it's good if journalists (even though they obviously have to be generalists) lean on the critical journalism that has already been done and won't start again. Examples in the post above. Dagbladet and NRK echo were both reported to pfu. Both of them have been “found free”. But: Journalists who dig in the "wrong way" are happy to end up there. And have more or less the same experience as researchers who do not fit in "right" history. They also step away, don't write anymore. You can read what they wrote, talk to them. The forces in our society that make it difficult with free research, would like to be the same ones that challenge free journalism?

There were a few silly comments under Vogt's post.

 

[rainy]

I really don’t understand why Eia is on the Women’s Health Committee. It feels like when the government decided to make the national competence service for ME, only to employ people that has no competence. Or how the Norwegian prime minister has written a preface in Live Landmark’s book about LP. Or how psychology professors at universities defend and use funds on quackery. Instead of finding people with the right knowledge we put people’s health in the hands of comedians.


I saw one of their podcast episodes had the description: ‘Eia mansplains Women’s Health’, and I was hoping he would talk about the committee and maybe show that he has some knowledge about the topic. No. He talked about botox and anti-aging, because that was a hot topic in the media. There was a controversy when a new beauty clinic managed to state that they are important for the topic of women’s health, and they got a lot of critisism for misrepresenting what women’s health is actually about. Eia and his co-host did not even mention this aspect of the debate, did not even talk about the topic of women’s health at all. They took the angle that botox is creating a hightened standard of beauty for women, so Eia’s question was what sort of stand would be most sexy for him to take on the topic of anti-aging? What would be the opinion that women would find him most attractive for having?

Psychology professor Kennair (involved in the LP trial) is also on the Women’s Health Committee, and in trying to research what his knowledge on the topic is, I have so far only seen articles written by him on topics like: Why men find 21 year old women the most sexually attractive; why women have sex outside of ovulation; women want a sexy partner for themselves, but would choose a responsible partner for their sister.

I hope the Women’s Health Committee meetings aren’t just discussions on women’s dating habits and what is sexy or not.

 

[rainy]

In a podcast episode after Eia and Steinkopfs debate on the news, they read an email from a follower who says Eia ‘let himself be bossed around by an assertive lady with ME’.

Sagen says he has a gift for Eia, and introduces psychology professor Silje Reme as a guest. (Reme organized the recent BPS seminar about ME and is involved in the LP study).

She talks about how there is a hard debate climate about ME, how ME activists threatens researchers, tries to get research papers withdrawn, death threats, how they needed guards at the BPS seminar, how people that score high on nevroticism are more likely to get ME and there’s lots of research that shows this. She says many studies show that none of the 20 diagnosis criteria for ME are valid and that maybe it makes more sense to see fatigue as a continuum, where ME is on one extreme end of the continuum.

When Sagen asks her what she thinks of Eia’s performance on the news she says that she thinks he was passive and he needs to do better.

Sagen tells Eia that he needs to find back to himself again, to become the one that cared about the truth and saying it as it is.

Finally Eia proclaims «Why should the consideration of my career, my position, the reputation of the Women’s Health Committee, why should it count more heavily than my obligation, my damned obligation, to what is true?! For the truth sets free!»

 

[Trish]

Ugh, that sounds truly awful, both for pwME and for women. It's frightening that people with such prejudice and ignorance are given so much power.

 

[Kalliope]

Thank you for the summary, @rainy
I've not had the stomach to listen to the podcast episodes

 

[bobbler]

This.

Like the old days of Jeremy Kyle type things making people into a freak show it seems these ‘debates’ are the replacement version of this after those tv shows had their day and were seen as distasteful or whatever.

they know longer term instead of the names of the horrible people being remembered it’s the ‘and the ME people got really upset’ or whatever flase memory because people remember gist and semantics and groups over names and specifics. And as with Jeremy Kyle after a decade people look back and say that wasn’t a proud time but it doesn’t seem to stop the reinvention popping up.

I don’t know enough about Norway (other than the country clearly having a big issue atm with ME bigotry due to certain quarters seeding it at least). Did they also always have these types of things and how are they seen by the majority/how niche is the audience?

 

[bobbler]

I really don’t understand why Eia is on the Women’s Health Committee. It feels like when the government decided to make the national competence service for ME, only to employ people that has no competence. Or how the Norwegian prime minister has written a preface in Live Landmark’s book about LP. Or how psychology professors at universities defend and use funds on quackery. Instead of finding people with the right knowledge we put people’s health in the hands of comedians.


I saw one of their podcast episodes had the description: ‘Eia mansplains Women’s Health’, and I was hoping he would talk about the committee and maybe show that he has some knowledge about the topic. No. He talked about botox and anti-aging, because that was a hot topic in the media. There was a controversy when a new beauty clinic managed to state that they are important for the topic of women’s health, and they got a lot of critisism for misrepresenting what women’s health is actually about. Eia and his co-host did not even mention this aspect of the debate, did not even talk about the topic of women’s health at all. They took the angle that botox is creating a hightened standard of beauty for women, so Eia’s question was what sort of stand would be most sexy for him to take on the topic of anti-aging? What would be the opinion that women would find him most attractive for having?

Psychology professor Kennair (involved in the LP trial) is also on the Women’s Health Committee, and in trying to research what his knowledge on the topic is, I have so far only seen articles written by him on topics like: Why men find 21 year old women the most sexually attractive; why women have sex outside of ovulation; women want a sexy partner for themselves, but would choose a responsible partner for their sister.

I hope the Women’s Health Committee meetings aren’t just discussions on women’s dating habits and what is sexy or not.

Well all that points to a clear misogyny issue and ME and the set up behind it just giving free license that it’s ok as long as it’s under the context of that vehicle. Which to me debunks any claims those doing it might have that they are caring about patients and not really just stoking stigma

 

[Midnattsol]

One of the comedians have made an official complaint to the press's ethical committee about a journalist from TV2 that wrote about ME without disclosing he had been part of a fundraising for ME research.

Didn't get through the article, but the comedian claims it has nothing to do with ME, but principle. And then he slams the research the journalist wrote about. Which, you know, would not be difficult to do of any of the BPS research but why do that..

 

[rainy]

Sagen says he has a gift for Eia, and introduces psychology professor Silje Reme as a guest. (Reme organized the recent BPS seminar about ME and is involved in the LP study).

The report on women’s health has been published by the committee now, and I see that Silje Reme is one of several people that were invited to have presentations for the committee. Reme’s talk was on «sex/gender differences in pain». I can’t find any information on the presentation.

I wonder if she was invited to speak to the women's health committee before or after she was a guest on Eia’s podcast.