Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome 2023 Bakken, Strand et al

Yes! That's the one.

Here's automatic translation of the Norwegian text in the first image:


Is deferred publicity applied for?
yes

What is the justification for the application for deferred publicity?
for the sake of ongoing research work

Elaborate on the rationale and state the information for which it is sought deferred publicity

There is an ongoing debate about CFS/ME and about research in the area, which in traditional and social media appears to be very polarized. We experience that planned projects (unintentionally from researchers) often become part of the debate.

We do not perceive our research questions as particularly controversial and we primarily want transparency and don't mind critical input.

But our impression is that the goals of planned projects are often interpreted into a picture of polarization, misunderstandings arise with criticism as a consequence.

Researchers in the field are often met with strong objections and campaigns, where these, for example, is attributed to intending to dismiss a biomedical understanding of the disease.

It is neither our starting point, intention nor possible with our design or method.

We are nevertheless concerned that strong objections from individuals and organizations that have defining power in individual groups could affect recruitment and selection and thereby weaken the scientific quality of the project

 

i know 'too medicalized'??? lol if only, there is no ruddy medicalization. At all, in my experience. Its all psychosomatic, all the way.

LOL

 

Tldr; we want to recruit people that don't know about the controversy of our methods and going public might make it easy to google why our trials are shit. Also, any effects measured rely completely on the insertion of bias which is hard if we're not the ones with sole access to these patients.

 

Wow this is even worse than I thought. A complete mockery of scientific research. I have read countless accounts of remission and recovery. Very few of them feature any of this nonsense, and if it does it's not nearly as wishy-washy. I have seen so many attributions of recovery. This protocol. That supplement. Doing this or not doing that.

By for the most common is a simple "I don't know, time I guess". Rest and pacing, of course. The latest is nicotine. And this is why serious people don't use anecdotes.

Basically, they asked for stories, and got stories. Then just decided to use only one:

They chose the version of events they prefer. Good science. Real serious stuff right here.

See, anecdotes are just better when they're cherry-picked and narratively framed. They just are. No, not those anecdotes.

And this suggests that RN's involvement was in everything but what is mentioned here, so heavily involved:

I genuinely feel that my life will have been wasted less than having anything to do with this BS.

 

We chose this story because it was authentic, vivid, and replete with all the elements stories typically possess. We neglected other stories because they didn’t have the elements stories typically possess, despite being stories themselves.

imagine publishing this and then propagating it shamelessly. It’s really cultish stuff. I wonder what the more reputable skeptics like Gaffney and Shure would think of LP. I imagine it’s even too rife with inanities and charlatanism for them.

 

Would be better if they present some objective evidence instead of stories.

 

Fair enough, wouldn't wish that on anyone either.

 

I actually realized it later, but the way they write it, they literally generalized the 14 cases out of that single anecdote, and to the wider condition, effectively to millions of people. It's not just that they emphasized this one anecdote, it's that they say they in their opinion, it is generally representative of all the participants, and thus of the myriad issues of Long Covid.

So they didn't just cherry-pick the anecdote they prefer, they explicitly say that this anecdote generalizes to everyone. Absurd.