Bodies in lockdown: Young women’s narratives of falling severely ill with ME/CFS during childhood and adolescence, 2022, Krabbe et al

[Andy]

Abstract

Thirteen women (16–30 years) storied their experiences about the process of falling severely ill with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during childhood and adolescence. We performed a narrative analysis informed by phenomenology which yielded three central themes: The active and meaningful life I used to live; gradually developing unhomeliness and feeling pushed toward the edge; and left abandoned on the sidelines. Out of the incomprehensible and unpredictable emerges an understanding of the scale of their ordeal, along with advice that may have made it worse. This portrays a gradual developing uncertain, unhomely life situation with no outlooks for future recovery.

Open access, https://www.tandfonline.com/doi/full/10.1080/07399332.2022.2043862

 

[Kalliope]

I don't quite understand why they only picked participants who had recovered. At least without saying how representative they are for the patient group.

For this study, our participants were young women who were in recovery or who had fully recovered from ME/CFS. We made this choice in order to gain insights from narratives which, we judged, would have greater coherence than accounts from those still struggling with serious illness.

Towards the end of the discussion they imply that severe ME is a strategy where "the body protects itself" as "a body that is shut down is no longer susceptible to being pressured into anything". I don't understand what they mean here, and why not disease progression is an option. There are lots of encounters from severe ME sufferers about still being pressured by health care workers even when their bodies have "shut down".

As they become increasingly ill, the girls strive to do as they are told, suppressing their bodies and living up to the expectations of others. But finally, they have to give in. Forced by their condition to withdraw from school, all social life and normal youthful activity, they fail in every aspect of being a girl in the process of becoming woman. In such a situation, it is difficult to break away from cultural and social boundaries, and just be allowed to fall ill. Hence, understanding the immanent body’s “shutting down” or going into “lockdown” during illness is to see it as a strategy by which the body protects itself, whether from itself or from external influences (or both). After all, a body that is shut down is no longer susceptible to being pressured into anything. It must be allowed to be at peace, be taken care of - and just be.

I was half expecting some Recovery Norge- like stories in this paper, as one of the contributors were the leader of the National Competence Service for CFS/ME (very pro LP, GET, CBT), so was surprised to read the "Clinical implications" (my bold):

Our findings highlight how advice from health professionals pushed severely ill young people to continue with their everyday lives even when they were experiencing incomprehensible bodily changes. Various factors, including youth, lack of comprehension of what was happening to their bodies, and lack of vocabulary to express what was happening to them, made it difficult for young people to stand up for themselves and resist professional advice. This underlines the need for health professionals and others working with children and adolescents to listen to what young patients have to say – and strive to make sense of their specific experiences. In the absence of this, young people who fall ill with ME/CFS may be denied important aspects of their transition from childhood and adolescence to adulthood. It is also possible that medical advice to stay active may actually be contributing to the severity of illness suffered by such young people. The specific health needs of children and adolescents falling severely ill are proposed for further research.