Producing ME/CFS in Dutch Newspapers. A Social-Discursive Analysis About Non/credibility 2023, de Boer, Slatman

[rvallee]

I've only read a bit, but I've found it interesting. The perspective of someone who seems to be coming from outside the debate could be helpful, even if they haven't properly understood some things. For example this:


I bet a lot of the patient representatives who use 'multi-system' don't realise that people are interpreting it as equivalent to bio-psycho-social. It's a term I don't like due to its vagueness - multi-symptom is a better representation. I wish advocates stop using 'multi-system' - it doesn't make ME/CFS sound more severe and consequential, which is what I think the aim is of its use. It's a bit better than complex, but still has the same problem.

I haven't once before seen multisystem illness being about anything but affecting multiple organ systems. It takes extremely bad faith interpretation to even pretend it could be about multiple possible causes. This seems like a made-up argument by someone who didn't bother understanding what the words even mean.

Frankly this horrible paper is itself part of the problem, it misrepresents reality and equates deliberate distortion on one side with what are actually simple concepts that are very easy to understand. It plays exactly the same role as both-sideism in journalism, where extremist positions can be compared as if equivalent to how people behave in response to extremist, and often deliberately harmful, policies and events.

There is context here. It's always the same context. There is nothing new about this controversy, it's basically the main controversy medicine has engaged in forever. It always ends up the same. It always uses the same arguments. Somehow this never matters, the entire context is removed and we simply end up caricaturized, maligned and discriminated the exact same way millions have before.

Somehow medicine is never to blame. Never ever ever. It is unthinkable, even though the context suggests that historically, medicine is almost always wrong at first, just like everyone else. This is why we have science, which has debunked many instances of this ideology.

 

[FMMM1]

I think I recall a comment from Jonathan (re another publication) that "these folks are in danger of disappearing up their own --- [insert text]"!

 

[bobbler]

Thanks for talking to Slatman, @Grigor, I'm sure you helped move her towards a better understanding.








I thought that point was interesting. It's an argument for the use of the term 'people with ME/CFS' rather than patient. Where we can we should provide more positive descriptions e.g. advocate. It reminds me of the way BPS proponents diminished David Tuller's status by using 'activist' rather than something like 'academic'.

Good quotes picked out all very interesting.

The term ‘testimonial quieting’ certainly strikes home as driven through everything here and a big issue to raise

 

[bobbler]

By mobilizing insights from social epistemology and epistemic injustice studies, this paper reveals how actors, through their social-discursive practices, attribute to establishing, sustaining, and disregarding their own and others’ epistemological position.

Hm. I think more likely:

By discussing something you have read about but do not have the common sense or background knowledge to really know much about and using complicated fashionable words from academic disciplines that have nothing better to do, you end up looking pretty silly to the people that matter in the case.

The authors have picked up some of the dynamics it seems, but talking about social dynamics like this without any sense of who is really right or wrong is just phoney to me. Physicist do not discuss the fact that some people think the earth is flat and others that it is round as if it didn't matter which. When such discussion is applied to emotive human interactions that include callous selfishness, stupidity and desperation it is unsavoury. Psychovoyeurism, basically.

Agreed. I have less issue with these terms if used from a pure proper philosophy perspective of good thinking and pulling out the fallacy and sophism. Or the philosophy or law or legal or any overlap with science (as philosophy does that too).

This seems to be from a sociological perspective but I can't even be sure which angle within that despite the terms of epistemic injustice. Is it culture, media etc influencing social relationships or that these articles actually reflect an attitude within relationships that should be pretty different to what they are would surely have the been obvious questions from this even if they weren't going to touch on the science.

I think the phrase in an organisation of a reasonable size upwards would be 'irreparably broken down' from some of the quotes @Hutan has picked out, and at that point the department gets moved under a different boss. Instead here they are allowed to be blatant in 'speaking for' and then trying to justify why said voice is 'undeserved' by trying to influence everyone outside to think of patients as fanatacists who perhaps don't know their own mind.

In this instance pretending not to/being obtuse about the treatments they are trying to sidestep and lump even just under psycho-behavioural (bad brainwashing of harmful things is bad though, and good brainwashing really needs you to be very sure that every person you diagnose has been done so correctly and that your treatment doesn't cause harm long-term) doesn't wash. Because it is basically implicit to the narrative rather. Weaponised to pretend it is 'mental health' because it is 'behavioural' and ergo infers the power that might come with needs to be checked by the author before that is just assigned by 'actor'. Doesn't mean it improved anyone's mental health nor that those doing it deserve the labels used to exclude their rightful testimony and feedback on any harm.

So yes I'm suspicious of this, despite the seemingly correct framework of terms being in there, but not being really used methodologically correctly.