“I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, 2025, Tenhave+

“I would love to say it’s the fatigue but honestly it’s not”: Into Adulthood with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
A. Tenhave; R. Bognar; A. Sidis

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a debilitating and poorly understood condition which interferes with adolescents’ typical development.

This study aimed to explore the experience of transitioning into adulthood from the perspective of adolescents and young adults (16-25yo) with CFS/ME. Thirteen young people recruited through a community allied health clinic in Victoria, Australia, participated in semi-structured interviews. Interviews were analysed using reflexive thematic analysis and produced the following themes: Independence: a different path or an inaccessible adulthood? Identity: who could I have been? Isolation and disconnection: being with people but not being like them.

Our analysis of these themes suggests several avenues to support young people with CFS/ME and their families. Mental health professionals may have a specific role in helping foster assertiveness and confidence, assisting identity exploration and understanding, and supporting families in helping their adolescent to continue to develop psychologically.

Link | PDF (Psychology, Health & Medicine) [Open Access]

 

And it keeps going into adulthood, when you get asked about your teens/young adulthood but have an experience so vastly different from many others.

 

I feel this one. All the way to the bone.

 

The correct term is ME/CFS. I was surprised that CFS/ME was used, until I realised which clinic is part of this study.

PEM does not refer to fatigue after exertion. Post-exertional malaise involves much more than fatigue.

The second author is from the Active Health Clinic, Blackburn, which specialises in rehabilitation of people with ME/CFS and the like. Their staff should know what PEM is. R. Bognar is an exercise physiologist. The owner of Active Health Clinic is Nathan Butler, who, heaven help us, is now an Associate Professor. Butler was involved in the PACE trial, and is as BPS as they come.
Here's more:
Australia: Active Health Clinic, Melbourne, Nathan Butler

I think the study needs to be read with this in mind, and consider if the study is part of contributing to the profile of the clinic as experts.

The introduction presents a very negative view of the impact of ME/CFS on people's emotional well-being. And, for sure, it's no picnic, not at all. But things like suggesting people with ME/CFS 'use less adaptive coping strategies' really makes it sound as though we are sitting around with our 'weaker sense of identity', waiting for Butler and friends to come along and help us be independent.

On selection -

 

It is interesting that a paragraph that starts out mentioning a lack of confidence with medical professionals ends up mostly concerned with the inducement of anxiety by pacing:

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I do understand the point they are making, that it is difficult to know if the balance between activity and avoiding PEM is as good as it can be. But it is rather ironic, as it has been medical professionals who have complicated pacing, with time consuming workbooks and regimented schedules. From memory, there is no mention of the harm of CBT aimed at combatting false illness beliefs or of GET. This is Australia, where the college of GPs has the HANDI resource recommending GET - Incremental physical activity for CFS/ME.

The HANDI page says

It is interesting that this paper seems to encourage further work on the negative aspects of pacing, while exercise therapies, which are offered by the second author in the clinic the second author is an employee of are not mentioned at all. No conflicts of interest are declared.