"It's like being a slave to your own body in a way": a qualitative study of adolescents with CFS

Spotted a link to this study in a tweet by @Tom Kindlon

It is a qualitative study from Norway with interviews of seven adolescents with ME.
The names of the authors are unfamiliar to me and I didn't get that much from the abstract, so wasn't sure which forum to put this in but decided to go for "general ME/CFS news".

Scandinavian Journal of Occupational Therapy
"I'ts like being a slave to your own body in a way": a qualitative study of adolescents with chronic fatigue syndrome

CFS/ME made the body unfamiliar and disconnected informants from participating in their usual daily occupations. A coherent interaction between body, occupational life and social self was achieved by taking their new body into account and adjusting their occupations accordingly. This practice enabled the participants to hope for a better future life.

 

Googled a bit..
The main author is an ergonomist who has worked closely with prof Wyller and promotes GET/CBT as treatments.

 

Any adolescent with a chronic illness will feel a huge range of emotions ( as does any adolescent).

Having a life so different to your peers, not physically or mentally being able to join in activities, or keep up with or even engage with education in some cases, is bound to affect self confidence, esteem and thoughts for the future.

However, having ME, which is so poorly understood, has such poor advice for those affected, and has no support mechanisms within society ( compare with cancer, kidney problems, diabetes) and i think it is amazing how well adolescents actually cope. Kudos to their families and those friends that stick around.

If you wish to understand something, walk in that person' s shoes.

 

https://twitter.com/user/status/1023674477283106817

 

I don't know the authors, but there are a lot of red flags in these names:

Acknowledgements

The authors thank the participants who shared their experi-
ences and reflections. We thank Vegard Bruun Bratholm
Wyller, Anette Winger, Kari Gjersum, Dag Sulheim and
Even Fagermoen in the NorCAPITAL study for support,
patient recruitment and collaboration. We also thank Kari
Nyheim Solbraekke for contributions in developing the
interview guide, and Lillebeth Larun for useful discussions
and support. Finally, thanks to Oslo University Hospital,
Section of Orthopaedic Rehabilitation, and Norwegian
National Advisory Unit on CFS/ME for support.

 

It can be useful to beware of such a background. But in this case I found the paper to be sympathetic. There was no mention of CBT, GET, rehabilitation programmes. Nor really of anything regarding maladaptive beliefs.

The introduction was not very exciting and I wondered how the paper would go but I am happy with it.

 

These were people who are taking part in the NorCAPITAL drug trial. They weren't seeing them as therapists from what I recall.

Fukuda criteria

We don't know anything about. Here is some information from another paper on the trial.

Note that the hobby refers to before they became ill.

I think in this case omitting severely affected patients could be relevant. I think the effect on such individuals would be worse, for example, in terms of their ability to still socialise with peers.

 

The individuals come across as having adapted well to the condition and having become mature because of the process.

 

If one didn't want to read the whole thing, the results section covers the vast majority of what is interesting.

One wouldn't need to know much (or anything?) about science to read this. Nor do I think language is particularly difficult, at least for a native speaker.

 

https://twitter.com/user/status/1024727539883929600

 

https://twitter.com/user/status/1024746195447685120

 

https://twitter.com/user/status/1024756630037127188

 

https://twitter.com/user/status/1024759602657812485

 

They don't really explore different time periods. For example, the time before getting a diagnosis versus after getting one.

 

An example of how they don't criticise the participants:

 

--

I don't think it's necessarily good that they all think they will make a full recovery.

For example, it means they may not make good/informed choices about their future. For example, both studying medicine and then working as a doctor (particularly as a junior doctor) is very difficult to do and has a big risk of causing a relapse. Similarly, sailing around the world. Some careers are easier to manage.

The authors don't comment on this. Maybe they don't believe it themselves and just don't want to criticise the participants, who knows.