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

[SNT Gatchaman]

“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]

 

[SNT Gatchaman]

This qualitative study, using semi-structured interviews, employed reflexive thematic analysis (Braun & Clarke, 2006). Two of the three authors have had a personal experience of CFS/ME. A critical realist perspective was held during collection and analysis, and the study was approved by the University of Wollongong Human Research Ethics Committee (Protocol Number 2022/199).

However, it was negative experiences with medical professionals which had profound, long-lasting, adverse effects. Some participants reported being treated like young children, perpetuating identity uncertainty and juxtaposing with their innate sense of maturity.

I guess probably that often we feel infantilized. You know the infantilization of being disabled. Participant 2​

While others reported being excluded from their own medical treatment.

I like being talked to and treated as a person with opinions. Participant 13​

Many participants reported experiencing disbelief from doctors, teachers and family members regarding the legitimacy of CFS/ME as a condition and subsequent attribution of symptoms to malingering or mental health concerns.

Participants also described how harmful interactions form barriers to accessing and engaging with healthcare. Such barriers commonly occurred due to disbelief, that is, being told one’s symptoms did not exist as they could not be corroborated by medical tests. The enormous ramifications for current and future emotional, mental and physical well-being are captured by Participant 13.

I’ve been diagnosed with PTSD from it now, but just a deep mistrust for doctors and medical professionals, which has haunted me. And it just got worse and worse. Every doctor that I saw told me something that I knew was untrue. Participant 13​

Some participants described chronic illness as an experience which clarified their values and perspective of what is important to them. Practising gratitude and self-compassion, learning to trust oneself and pets were other positive experiences participants noted.

 

[Amw66]

The BPS true legacy .

 

[ME/CFS Skeptic]

Seems like this study captured the main themes quite well. The struggle between becoming an adult and remaining dependent because of illness, the disbelief by doctors which cause an erosion of trust, feeling blamed for your illness, the disbelief that a young person could be so ill, trying to maintain friendships when you have been out of all social events for a long time, etc.

 

[Midnattsol]

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.

 

[rvallee]

So the problem is mostly with medicine. Easy to find where the fix should be, and maybe in some ways it could involve mental health professionals, but it isn't the patients who need to be taught how to behave.

Far easier fix to this would be to simply not do the bad things, to not teach the physicians how to misbehave, and address their past misbehaviors and their root causes. Turns out that refusing to help according to needs is a terrible idea, and settling instead on delusional fantasies is even worse.

Every doctor that I saw told me something that I knew was untrue

You can't fix this by helping the victims. You fix this by changing the misbehavior of the abusers. There is no world in which medical professionals lying is OK. It will never be OK. It will in fact always be atrociously bad.

This is one of the most common reflections I saw in the many years of daily reading through LC forums: medical professionals say so many false things. Maybe they're just confused or misled, maybe they're lies, but coming from professionals there is no difference. It's fundamentally the exact same thing.

 

[Sean]

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

 

[Hutan]

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

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

First, individuals with CFS/ME experience debilitating fatigue which is not aided or reduced by rest (Bested & Marshall, Citation2015). Second, the condition is characterised by post-exertional malaise (PEM), which refers to fatigue after even mild mental and/or physical exertion

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.

Adults with CFS/ME report how the illness undermined their understanding of themselves until they did not recognise who they were (Williams et al., Citation2019; Winger et al., Citation2014). K. P. D. Luyckx et al. (Citation2008) further investigated the impact of chronic illness on identity, observing that those with a chronic illness were more likely to have a weaker sense of identity, depressive symptoms and use less adaptive coping strategies. That is, one’s sense of identity impacted mental and emotional well-being and physical health management.

Depressive symptoms, such as lowered mood, hopelessness and burdensomeness, are a natural response to the experiences of lost independence and identity interference. While they can co-occur, depression and CFS/ME are distinct conditions which must be distinguished

On selection -

Participants were recruited through a closed social media group for current and previous clients of an Australian metropolitan community allied health clinic.

Based on Braun and Clarke (Citation2006), a sample size of 10 to 15 participants was deemed suitable for conducting a reflexive thematic analysis. Some participants had an existing or prior professional relationship with the second author, and any risk of participant obligation was managed by requesting interested participants respond to a Qualtrics survey which was only available to the first and last authors and ensuring all data was de-identified by the first author prior to analysis. Participants were assured their involvement and information would remain confidential and would not affect their relationship with members of the research team.

 

[Hutan]

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:

Furthermore, many participants expressed a lack of confidence either in themselves, medical professionals, or both. Of themselves, participants revealed often questioning their assessment of their capacity. This is perhaps an unintended product of an important intervention known as activity pacing. Pacing requires individuals to assess the requirements of a task, such as the mental and physical effort required, and to evaluate their resources and capacity to complete this task. For individuals with CFS/ME, this process applies to the most fundamental of tasks such as judging one’s ability to sit upright to eat or drink. To function, participants described constantly using such analytic processes to manage their energy and plan activities accordingly. Evaluating what will preserve one’s energy and overall well-being can be difficult due to the fluctuating nature of CFS/ME, such that what is suitable one day may be detrimental on another. Engaging in this analytic process may in part predispose individuals to anxiety or perpetuate their worry or self-recrimination. This is supported by previous research which demonstrates a relationship between judgemental self-doubt and depression, low self-esteem, anxiety and procrastination (Mirels et al., Citation2002).

...

Furthermore, clinicians can support this population through their use of activity pacing. A crucial intervention in helping individuals with CFS/ME to manage their energy levels, the participants suggested there may be some unintended consequences of this approach. As previously discussed, constant evaluation and self-reflection, as required for pacing, may foster self-doubt and a sense of incompetence. As such, practitioners may consider encouraging self-confidence, self-compassion and reassurance that perfect management is not possible. However, the experience of activity pacing was not explicitly explored in this study and may be a helpful focus of future research. Additionally, it is also possible that pre-existing anxiety accounted for or exacerbated the experiences described by participants.

...

Conclusions: ...Another possible focus may concern the psychological implications of activity pacing and its relationship with anxiety and/or mood disturbances.

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

Incremental physical activity should be supervised by a physiotherapist or accredited exercise physiologist, preferably with specific experience and training in working with people with CFS/ME.

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.

 

[Utsikt]

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:

...

...


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.

It seems like they might be trying to lay down the groundwork for a future study on how pacing is bad for you because it makes you anxious, and we all know that anxiety is part of the root causes of CFS symptoms so we should avoid pacing too much.

 

[rvallee]

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:

This, to me, rings the exact same bell as "lockdowns wrecked the economy and society and should just not have happened", completely ignoring why the lockdowns even happened: the freaking global pandemic that killed 20M+ and disabled even more. Infantile nonsense.

They don't seem to understand the basic concepts. Such a silly idea to build a clinical model based on teaching things they don't even bother to understand.

It's the contrast between the participants' comments and the complete inability to hear anything they say that is jarring. They hear what the participants say, but understand something else entirely. It resembles and overlaps with those concepts, but in a way that makes it clear they simply know the words, but have no idea what they actually mean.

 

[Dolphin]

ME Research UK:

A study at the University of Wollongong in Australia has identified that for young people aged 16-25, having “CFS/ME” deeply impacted their “experience of adulthood and relationships, and the consolidation and formation of their identity”.

The small study of 13 people also found that “people not understanding” was "the biggest struggle" with having the disease.

Read more about the research here: https://tinyurl.com/mr3rr8nx