Norwegian journal for journalists covers the ME debate

"Journalisten" is a professional journal for Norwegian journalists, covering among other work conditions for journalists.

They have had a series with articles about covering ME.

Article 1:

It started with an interview with the journalist Amanda Schei who wrote some articles on ME (with a BPS approach) for an academic news site Khrono. She interviewed researchers who don't want to work with ME due to harassment. She felt the reactions she got on her articles were organised, and received a lot of emails and notifications on social media.

The angle in the interview is that ME is so noisy to write about, that she doesn't want to write about it anymore.

Ba om å få slutte å skrive om ME-forskning for Khrono: - Plutselig kjenner man at det er nok
google translation: Asked to not write anymore about ME research for Khrono: - Suddenly you feel enough is enough

Article 2:

Nina Kristiansen was the previous editor for the news site about research Forskning.no. She has several times talked about the ME debate, supporting the BPS-side. She and an anonymous journalist talk about the high temperature in the ME debate. Kristiansen says it's the patients who lose if researchers stop researching ME and journalists stop writing about ME.

Nina Kristiansen om å dekke ME-feltet: - Folk undersøker privatlivet vårt
google translation: Nina Kristiansen about covering ME: - People investigate our private lives

(post edited for typos)

 

Article 3:

An interview with the assisting general secretary of the Norwegian ME Association, Trude Schei. She provides good background information for the ME debate and says what media is writing about ME has consequences for how the patients are treated. She says it's important to do proper research before writing about this topic and that it's more important to cover the situation for ME patients, rather than whether the disease is physiological or psychological. She says the relationship between the media and the patient association is challenging and that it's hard to get their view across. She says to the journalist that this is the first time she's actually sitting down with a journalist to talk about these matters.

ME-foreningen: Å kommentere på nett er kanskje eneste utvei til utløp for frustrasjon
google translation: The ME Association: Commenting online is perhaps the only outlet for frustration

Article 4:

An interview with journalist Sigrid Sollund who works in a topical news debate program for the public broadcaster NRK. Both she and the program are well respected and she has covered ME over some time. She says it's challenging to cover ME and that it's a polarised field characterised with very little dialogue.

- Seen from the outside, it can seem as if people on one side of the conflict experience the so-called ME activists as an influential and threatening group, while those on the other side, on the contrary, feel that they belong to a powerless, exposed and vulnerable group

ME-journalistikk: - Gir vi opp, har vi spilt falitt
google translation: ME journalism: - If we give up, we've lost

 

Sad to read. I don't think angry or aggressive comments on social media are helpful for ME/CFS advocacy. On the other hand the journalists do not seem very interested in learning about the arguments and view of the patient community. One of them seems to say that patients don't want a debate.

Quote from the first article: "- "I believe that debate and criticism are a good thing, but in this case it feels like they don't want debate," says Schei. "The fact that you feel that there are people who don't want you to do your job, that's when it becomes problematic.

 

Patient advocate Nina E. Steinkopf published yesterday a summary of the article series in Journalisten with a long and shocking list of the backlash she has endured from the BPS side:

- I am one of many thousands of patients who have deteriorated from dealing with the healthcare system. When I promote academic and factual criticism in the hope that the situation will improve for those who come after me, I am attempted to be silenced by people in power.

ME-journalistikk; Hvis pressen hadde gravd litt dypere
google translation: ME journalism; If the press had dug a little deeper

 

I think Trude Schei of the ME Association does a good job at countering the issues raised. She said:

"I think it's terribly sad if someone reacts badly, you shouldn't, but at the same time I can't help but think of a small child teasing another, and when the other child retaliates, the one who teased cries.

She continues: "What the media writes has direct consequences on how people with ME get benefits, what kind of help and support they get in their municipalities, and how they are treated in general."

 

Agree. She did a great job.
And I also felt that the journalist might have had a journey covering this topic and discovering more nuances.

But it's quite thought provoking that it's such a rare experience for someone from the patient organisation to actually get a chance to sit down with a journalist and talk through matters. More of this, please!

 

There was a good thread from Gunhild Alvik Nyborg, MD on twitter based on the interview with the Norwegian ME Association. I hope the automatic translation does it justice:

Comment @journalisten from a doctor who has indirectly gained some insight into ME after researching LC: In your 1st article you wrote that the researchers say they believe in the "biopsychosocial" model. My experience is that these researchers rather promote a psychosomatic understanding of ME. 1/

In such a model, biological factors can of course also play a role, for example stress hormones, but you can recover just from psychological interventions, there is no biological substrate. But this is not really what is called a biopsychosocial cause. 2/

, where there are biological, social and psychological factors that play together. For example: viral persistence (as seen in LC, whether it is the cause v/ME is uncertain, but some research suggests that), which can lead to the need to give the body longer rest than after a normal infection. 3/

_Social_ factors can make it impossible to get the necessary rest (e.g. single mother - family occasion coming up - demanding boss) and _psychological_ factors can influence sickness behavior (e.g. perfectionists/athletes will push themselves to far, those who are afraid of criticism dare not rest enough, etc. ). 4/

But it is basically a biological substrate. So far I have not met a single ME patient who objects to this kind of thinking, but they object to the pure psychosomatic model (which is also a necessary explanation if one is to defend using LP in ME). 5/

It is understandable, as a purely psychosomatic cause cannot be supported in the research, as I know it. Also because the idea of pure psychosomatics does not take into account that excessive activity can be very harmful in those with PEM.6/

 

Sure! Have added a link now

 

Science education researcher Unni Eikeseth has shared Steinkopf's blog post on Twitter and comments (automatically translated) :

ME journalism in Norway is a scandal. Where is the power-critical look from the press? Where are the cases where the media work to protect ME patients from abuse and neglect by the authorities or uncover objectionable conditions in the treatment of patients?

It probably won't take long before the Norwegian media have to realize that they have been in a dead end when it comes to coverage of #ME. Then I hope the media will take a look in the mirror and discuss where it went wrong, and how they can prevent this from happening again.

 

When researchers like Wyller partake in a series of articles entitled “the ME war” in a tabloid journal (Dagbladet), where the journalists side with them, it seems clear that their goal is to promote their views rather than having a calm and sensible debate about ME.

 

That the disabling, sometimes fatal, well classified, biomedical disease ME is being portrayed primarily as 'a debate' in Norway is the problem.


From early on, in the case of Wessely from circa 1989, Psycho-Social medics used the press to position themselves as the victims, and the press eagerly complied. Wyller and the Lightning-supporting medics in Norway are simply continuing the well established tactic of using the media to portray themselves as the 'real victims' and positioning ME patients as unreasonable, uncouth, irrational and threatening. Journalists followed suit by portraying themselves also as victims of desperate sick and disabled ME patients.


The real question is - Why are the high profile Norwegian papers perpetuating a fatuous and fictional, manufactured 'Debate'? 'The ME Debate' is fundamentally a tactic used by the Psychosocial Lobby to justify and prolong it's own existence.

'The Debate' looks as though it was created especially for the media, for the press loves such 'Debates', and 'The ME Debate' will provide fodder for articles for the foreseeable future.

Sorry if that is not totally clear, my writing capacity is somewhat mangled at present.

 

A new and powerful Blogpost by MElife



ME Journalism; If the press had dug a little deeper
16 June 2023· by melifet

https://melivet.com/2023/06/16/me-journalistikk-hvis-pressen-hadde-gravd-litt-dypere/


(Sorry if this has already been posted on the forum)

 

. One of them seems to say that patients don't want a debate.


Because entering into debate legitimises the continuing practice of medical gaslighting in a situation where the overwhelming biomedical evidence and near total lack of patient consent for psych approach are facts on the ground. Even if just that almost all patients simply do not consent to an approach widely recognised now as harmful - there is nothing to discuss. Flat earth uni societies can be fun, but who has time?

I certainly object to biopsychosocial approach in clinical medicine. I think it has no place there - common sense has, yes, as any good doctor used before bps was there, but it is far too widely abused and distorted, applied to the detriment and often exclusion of any biomedical care. I have very few minutes with a doctor in an appt and very few appts I can get to, I object in the strongest possible terms to any of that time being wasted on nonsense I could look at elsewhere or can do absolutely nothing about. I want focussed excellent biomedical care to help me live with a devastating disease.

 

We've been having that debate for decades, while they skipped it going their merry way. They haven't shown up with anything and now that it's biting them in the ass they want a debate?

 

This is pretty topical right now for people who are on twitter. There's been a lot of controversy over a famous vaccine researcher, Peter Hotez, who is countering disinformation online and ended up prominently targeted by the likes of Joe Rogan, Elon Musk and Robert Kennedy over very explicitly antivaccine BS.

And the "debate me" crowd did exactly that: challenge Hotez to go on Rogan's radio show and debate Robert Kennedy over a bunch of conspiracy theories. And he refuses to do that, because 1) debate is for entertainment and 2) it legitimizes the quacks.

And this is my attitude on the issue of "debating" chronic illness and ME: reality is not up for debate. Debate serves no actual purpose in determining what's true, it is all about removing the advantage of expertise and facts and level it to a bunch of snappy comebacks and soundbites. There have been endless debates about the nature of peptic ulcers. None of it mattered, the only relevant factor to finding out what's true is courageous scientific research.

No, we don't want debates. Obviously. We want respect, expert medical care and research. They want debates. People who don't have facts on their side want debates, certainly above doing actual competent scientific research. Basically they want entertainment and to silence their critics. We want expertise and science. This is not a matter for debate.