The fragile process of Homecoming - Young women in recovery from severe ME/CFS, 2022, Krabbe et al

Purpose
To explore the recovery narratives of 13 young women who had fallen ill with severe Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), during childhood and adolescence, with the focus on what they had to say about their past experiences from the perspective of the present.

Method
A qualitative narrative approach, informed by a phenomenological theoretical perspective, was adopted to explore what the women found significant and meaningful in their recovery process. Data analysis of in-depth narrative interviews was performed which are presented to readers through the stories of two particular participants.

Results
The first story describes how one participant made a recovery by testing her body’s tolerance and working to create a more confident self. The second story describes a complex exploration of possibilities for action in recovery, along with a struggle to make sense of setbacks and hold on to what has been gained.

Conclusion
Recovering from ME/CFS emerges as an inter-personal, contextual, fragile and nonlinear process of homecoming, based on gradually rising bodily based self-knowledge. Illness slowly fades away into the background, and there is the prospect of a healthier tomorrow.

Open access, https://www.tandfonline.com/doi/full/10.1080/17482631.2022.2146244

 

Not sure why things like these are published in a scientific journal: 5 authors reflect on the illness trajectory of 2 patients.

They could have just published their ideas and views on a blog or something like that. It would have been more valuable to hear from the patients themselves. Patients often post about their illness trajectory on Facebook, so this doesn't add anything new IMHO.

 

Yes but it was published on Pubmed, I got a notification about this study from there. And all the authors are working at the University of Oslo.

A lot of the costs of scientific research goes to salaries of academics and society obviously only has limited resources to invest in scientific research. So I'm quite frustrated with papers like these. It seems like the authors were just philosophising and using ME/CFS to think about things they find interesting without helping patients or scientific understanding in any way.

 

This work was supported by the Norwegian ExtraFoundation for Health and Rehabilitation [2019/FO244604].

Does anyone know more about this? This seems to be their website:
https://norwaycenterrehab.com/about-us/

EDIT: isn't this a conflict of interest?

 

In principle a 'philosophy of health' or perhaps 'an examination of philosophies of health' should be of assistance to those dealing with philosophical questions in medicine and the delivery of health services - so I think it's not surprising that there should be academics studying the philosophy health. A liberal scientific and education system probably shouldn't exclude it simply on the basis of functionalism. Of course whether the current output of any one department is valuable is a different matter.

Phenomenology is one of the key words in unravelling some of the basic thinking: The Phenomenology of Health and Illness and A Defense of the Phenomenological Account of Health and Illness

by way balance - my personal take on "Fragile Home Coming" is that I want to throw rocks at it, then set it on fire - but then I'm bad tempered old bloke who is no doubt far out of tune with both the researchers and their study participants, I mean none them are quoted as saying how much they've reconnected with Death Metal now they are well.

 

This reads like "men writing about women in the 19th century". Absolute cringe.

 

Whatever this is, it’s not philosophy or philosophising. Maybe it’s a weird new branch of critical theory. It does seem like an extraordinary thing for Norwegian health scientists to be writing, and @ME/CFS Skeptic is bang on the money: the most egregious aspect is the waste of resources.

 

Indeed, this is an entirely bogus activity purely designed to make telling stories about other people sound as if it is academic and to claim to have published in journals.

Or worse, it is sanitised voyeurism.

 

Mindless self-indulgence comes to mind.

This is clearly a natural biological process that has nothing to do with their woo. It's actually telling that there is not a single thought put to this possibility, which explains why most recover with time. There is no need to introduce anything more. We are seeing the same thing with LC.

Maybe esoteric medicine is the best term for this nonsense, or mystical. In the end it's narratives based on the belief that they know better and no one else can judge or comment. They work in secret and can't tell you the magical formula, mystery is emphasized, even though it's the product of willful ignorance and no one can verify anything because no reliable records are kept, all on purpose.

Maybe bullshit medicine is the better term. But this has nothing to do with medicine, in fact the whole process has been about de-medicalization. This is genuinely one of the most insane things happening in the modern world. Incredible.

 

These sorts of pseudoacademic disciplines should be completely defunded and the departments purged of people of this sort.

 

Well if it's so wonderful then no doubt it will all be confirmed by monitoring activity levels pre and post intervention -- with sufficient time to show that any improvement is maintained --- or does the "magic" disappear when you try to measure it objectively?

 

Oslo universitetssykehus - is the ‘home’ for our bps-brigade.

The national service for cfs/me (yes, I know - it’s actually named that) is located there. The one lead by Ingrid B. Helland.

The authors are actually all women. Not that makes it any less cringe.

I think it should mainly be read as propaganda.

I would argue this must be read within the context of the forever ongoing ME-debate in Norway.

Helland likes to promote recovery Norway in talks etc. Argues it’s important to give patients hope, recovery-stories is supposed to help patients.

Getting these types of stories published in the medical litterature, gives them more leverage then pointing to an organization that is obviously sketchy.

Or maybe I’m just a bit paranoid…. and these physioterapists are genuine in ‘whatever they tried to do’. One way or the other, this will be pointed to as ‘evidence’ in the Norwegian ME-debate I’m sure of.

 

Ok thanks for explaining.

 

This is an incredibly embarrassing title. I showed it to my mom and she basically facepalmed. It's distressing that some people don't even discuss ME the way they discuss all other illnesses. Recovery is not "homecoming," it's not having symptoms or disability anymore.

Addendum: Worse, the phrase "in recovery" is often used to refer to people recovering from drug addiction. I believe this is likely accidental as the authors are Norwegian and thus might occasionally use words slightly differently.

 

I wouldn't go after the authors of bogus studies like this - I'd go after any publicly accountable body that funds it.

E.g. I get really annoyed that PACE got £5 million of public money despite not doing what they were supposed to do - collect [objective] activity data using Fitbit type technology. So if your Government is funding this then target the head of the Government Department which funded it - target the Prime Minister - it is both offensive and a waste of public money.

 

The authors start out laying down some expectations for what the participants’ stories will be: profound and meaning-making.

And this is perhaps what is expected to be the moral of the stories of ME in adolescence?

Then they compare the participants stories, and analyse their storytelling abilities and whether they are pleasing to the authors or not.

They contrast Hedda’s story with Cornelia's story. They write that Cornelia is fully recovered, and her story is an example of “structured, finished, and coherent storytelling”. While Hedda is only in the process of recovery, not fully recovered, and her story “appears somewhat unfinished and chaotic when compared with Cornelia’s account.”

I found the paper really disturbing to read. To me it reads as the authors are rating the patients lives and way of talking about their lives. It feels like what the authors want is to be told an inspiring, easy to comprehend story about overcoming childhood illness that they can add their own philosophical meaning to.