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

Kalliope said:
I saw on Twitter that this research project applied for an exemption of public announcement of the study and its protocol, because the researchers expected criticism from patients. The request was approved. This was information gained via FOI requests, but I can't remember who shared it on Twitter.
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There is this one about the FOI, not sure if it's the one you've seen though:


Sorry, not up for translating right now :)
 
Midnattsol said:
There is this one about the FOI, not sure if it's the one you've seen though:


Sorry, not up for translating right now :)
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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
 
Hoopoe said:
I can only laugh at the idea of too much biomedicalization because the reality is that there is extreme neglect. It's really something for a person to look at the almost complete absence of medical treatments, diagnostics, training, and general attention given and declare that this is far too much. Maybe things are different in Norway but from what I've seen there are no major differences in the treatment of ME between healthcare systems.
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i know 'too medicalized'??? lol if only, there is no ruddy medicalization. At all, in my experience. Its all psychosomatic, all the way.

Kalliope said:
We do not perceive our research questions as particularly controversial and we primarily want transparency and don't mind critical input.
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LOL
 
Kalliope said:
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
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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.
 
researchers applying for deferred publicity" said:
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
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Even with that deferred publicity, they only got 14 participants.
Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants’ experiences and understandings. We present the result through one participant’s story.
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They presented the results "through one [selected] participant's story".

abstract said:
We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.
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And then they added their own opinions for good measure.
 
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:
All participants were interviewed individually and with a narrative approach
...
We identified plotlines, narrative understandings, transitions, turning points and how the narratives were formed by available narrative resources and different dominating voices throughout the trajectory of illness and recovery. Common patterns in the stories were recognized. Furthermore, we explored what functions the narratives might serve for the storyteller.

We have chosen to present the results in this paper through one participant’s story.
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They chose the version of events they prefer. Good science. Real serious stuff right here.
We chose Erik’s story because it captures a common pattern of plotline, narrative understandings, transitions, turning point and dominating voices found in all stories in an information rich, nuanced and vivid way. Several non-shared aspects and experiences, e.g., perceived causes, onset and duration of illness, duration of recovery and degrees of setbacks, were regarded as less significant for the aim of this paper. Our telling is a result of careful listening and co-constructing of a narrative through a dialogical reflexive and iterative process, with the intent to keep and convey the story’s vividness, authenticity and to “let the story breath”
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One comprehensive and coherent story allows for wholeness in the presented narrative construction of meaning
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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:
Recovery Norway (RN), an organization of people who have recovered from CFS/ME and similar health issues, acted as a formal collaborator. RN contributed with inputs in the very first phase of idea development and planning of the study, although they did not collaborate in designing the study or in development of interview guides. RN was one of several sources for the recruitment of participants. Data analysis was carried out without the involvement of RN representatives, patients or former patients.
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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.
 
If the authors of this study are reading this thread, I would like to challenge them to do a parallel study of people who tried the same treatment and became sicker as a result.

There are plenty to choose from on this site:
https://lp-fortellinger.no/
Translated into English here:
https://lp-fortellinger.no/en/lp-stories/

Forum thread here:
https://www.s4me.info/threads/lp-fo...tning-process-now-available-in-english.24653/

If the authors claim to be taking a scientific view of the subject, they need to look at all sides of responses to the treatment, not just those who say they have recovered.
 
Trish said:
If the authors of this study are reading this thread, I would like to challenge them to do a parallel study of people who tried the same treatment and became sicker as a result.

There are plenty to choose from on this site:
https://lp-fortellinger.no/
Translated into English here:
https://lp-fortellinger.no/en/lp-stories/

Forum thread here:
https://www.s4me.info/threads/lp-fo...tning-process-now-available-in-english.24653/

If the authors claim to be taking a scientific view of the subject, they need to look at all sides of responses to the treatment, not just those who say they have recovered.
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Would be better if they present some objective evidence instead of stories.
 
Charles B. said:
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.
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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.
 
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