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

[Trish]

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.

I agree, I found that too. I think the 'researchers' have abused the trust of the participants by wanting to fit their stories into a preconceived idea that recovery is about personal growth, positive thinking and success, and that the corrollary to that is that those who haven't had the good fortune to recover are in some way incomplete, or unsuccessful, rather than unlucky and/or victims of inappropriate treatment.

I also think they have missed the key point that is buried in their story. Recovery in ME/CFS occurs by chance and luck, and also requires the person to be taught and understand the need for pacing and rest, and to be supported in getting sufficient rest.

The fact that the participants whose stories are told were not given appropriate advice and support from the start about pacing is a failing of the medical system. Far from being a process of personal growth and discovery, as it's painted here, learning to listen to the body and pace activities is a practical management strategy which should be taught and supported from the start.

People diagnosed with ME/CFS don't need positive thinking and inspirational stories of recovery, they need practical activity management advice, symptomatic treatments where possible, and relevant support.

 

[Arnie Pye]

I've never understood the cultural baggage associated with 'Homecoming'. Once I left school I was never going back.

 

[rvallee]

Since storytelling is understood as our fundamental way of making sense of our experiences

Uh, wat now? No. I don't even know what that means. There are many ways to make sense of our experiences without storytelling and most storytelling is not about making sense of our experiences but to tell stories, usually as a job or simply to entertain. Frankly this reads like someone who thinks that life in their immediate environment and from their own perspective is the same as everywhere.

This is all waffle and no syrup. I don't understand the idea of paying people to produce nonsense like this, this is even less useful than the wasteful tchotchkes that end up at flea markets.

 

[Cheshire]

The fundamental thing that helped me to make sense of my experience was to realise how dysfunctional medecine is, and try to get my head around it.

 

[Sean]

I have learned to be wary of anything that uses the 'narrative' concept as explanation or method.

 

[FMMM1]

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.

Another thought. "Target" any female politician who is a decision maker e.g. if it's a (female) government minister/junior minister/prime minister funding this, via their department, then highlight the Norwegian study showing age onset and gender - there are two onset peaks - puberty/teenage women and a later peak 40 ish women (?) Some women politicians may recall a school (female) friend who disappeared off the radar due to poor health --- or they may be mothers with children around that age.
So possible ways in to challenge this.

 

[Hutan]

Methodological considerations
In terms of robustness and trustworthiness, the findings of this study are reinforced by the transparency of the analysis

What transparency of analysis? The authors took the one or two hour interviews of 13 young women and then chatted about them amongst themselves, applying their prejudices and beliefs to what they had heard as they did so. They then concocted two narratives which illustrated the ideas they felt needed to be presented.

There is no transparency. There is no analysis, not in any scientific sense.

This is not science, this is belief confirmation and, as others have said, it is propaganda.

 

[rvallee]

This is not science, this is belief confirmation and, as others have said, it is propaganda.

Hey there was that other study that touted in their exercise program the fact that it doesn't require expensive equipment as a strength. Even though one of the two arms required access to a pool.

It's not like basic facts and coherence matter in EBM. The process is simply to say that it's good or that it works and since anything passes, they can now cite themselves self-referentially.

Yeah seriously who the hell thought this system was going to work out well? Sure, let's just have people judge on evidence in a multi-step process where every step requires arbitrary judgment and ends up in a details-laundering process where all depth and substance are removed. Surely that's just as good as actual science and empirical evidence, said no one who thought about this.

Frankly, I am coming to the conclusion that this wasn't really built to give scientific answers, it was built to give answers the people who built this wanted. And it kept going precisely because it gave those answers everyone desired. The whole evidence-based medicine paradigm needs to end, it's a blight on humanity at this point, it is quite literally a civilizational threat when it starts getting in the way of dealing with issues like pandemics.