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

[Kalliope]

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.

 

[Trish]

Abstract

Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common disabling illness in adolescents that may limit participation in daily life.

Aim: This study explored interactions between the illness experiences of adolescents with CFS/ME, their occupational lives and expectations for the future.

Methods: Seven adolescents with CFS/ME were interviewed. The interviews were analyzed using thematic analysis.

Results: Three themes were developed. ‘Being ruled by an unfamiliar and inexplicable body’, which illustrated that altered and strange bodies seemed to separate and disrupt the participants from their former occupational lives. ‘On the sideline of life with peers’, which demonstrated that the informants spent time at home, doing undemanding activities instead of participating in activities with peers. ‘A coherent connection between present and future life’, which was reflected by how the participants eventually accepted their situation and rebuilt a meaningful occupational life and value of self.

Conclusion: 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.

Erk is my reaction. That abstract is so simplistic as to be meaningless. How much of what those kids said was what they thought the therapists wanted to hear?

Anyone got access to the full text? So many questions - what diagnostic criteria were used, what treatment had the kids undergone (LP?), how long had they been sick, how sick were they?

 

[Kalliope]

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

 

[Amw66]

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.

 

[Tom Kindlon]

 

[Kalliope]

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.

 

[Tom Kindlon]

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

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.

 

[Tom Kindlon]

Erk is my reaction. That abstract is so simplistic as to be meaningless. How much of what those kids said was what they thought the therapists wanted to hear?

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

Anyone got access to the full text? So many questions - what diagnostic criteria were used

Fukuda criteria

what treatment had the kids undergone (LP?)

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

Recruitment of patients with CFS

All hospital paediatric departments in Norway (n=20), primary care paediatricians and general practitioners were invited to refer adolescents with CFS aged 12–18 years consecutively to our department, which is a national referral centre for young patients with CFS. To be eligible for the NorCAPITAL project, we required 3 months of unexplained chronic/relapsing fatigue of new onset, and in line with clinical guidelines the patients were not required to meet any additional symptom criteria.13 15 A standard form required the referral unit to confirm the result of clinical investigations considered compulsory to diagnose paediatric CFS according to national Norwegian recommendations (evaluation by paediatric specialist, extensive haematology and biochemistry analyses, chest X-ray, abdominal ultrasound, and MRI of the brain). Also, the referring units were required to confirm that the patient (1) was hindered from normal school attendance due to fatigue; (2) was not permanently bedridden; (3) was not struck by a medical or psychiatric disorder (including depression) and/or did not go through any concurrent demanding life event, both could possibly account for the present fatigue; and (4) did not use medicines (including hormone contraceptives) regularly. Patients considered eligible were summoned to our study centre; a final decision on inclusion was made after a separate clinical examination combined with quality assessment of the previously conducted screening programme. Details of the recruitment procedure and inclusion/exclusion criteria are described elsewhere.8

how long had they been sick

Table 1. Participant demographics.
Gender Age Name Illness duration Favourite hobby
Female 16 Christine 12 months Dancing
Female 15 Marianne 6 months Sports
Female 16 Charlotte 36 months Horse riding
Female 17 Sara 15 months Music and arts
Male 15 Andreas 48 months Music
Female 16 Ingrid 7 months Football
Male 15 Martin 23 months Football

Note that the hobby refers to before they became ill.

how sick were they?

Most of the participants lived with both of their parents and one or more siblings. All of them had reduced school attendance, except for one participant who was on sick leave. The school schedule varied from 2–3 hours for three days per week to 4 hours every day. Some participants also received homeschooling one or two days per week. Although two of the participants had chosen vocational directions, the majority attended a general secondary school. At the time of the interviews, they spent time with friends when they had sufficient energy.

First, this study was performed in a hospital and accordingly recruited informants among clinical cases, and, second, patients who were severely affected might not have had the energy to participate in the trial. Thus, our findings might not be transferable to adolescents with CFS/ME who are more severely affected or those not using health services.

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.

 

[Tom Kindlon]

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

 

[Tom Kindlon]

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.

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

 

[Tom Kindlon]

The perceived changes of the body were invisible to other people and hence not recognized. The participants found it difficult to explain to friends and family what this experience was like. They were unable to explain why they could not participate in occupations as they did before because the participants did not understand why they felt so tired and worn out. They had the feeling of not being believed when they attempted to explain their situation. Mistrust of others became evident as the informants reported having been told that they were lazy and that they needed to pull themselves together. Even medical doctors seemed to question their unfamiliar body experiences when the informants talked about their symptoms: ‘Then, he [the doctor] said that it was just … anxiety … and that I sort of wanted it, you know, and I denied that’. [Charlotte].

 

[Dolphin]

On the sideline of life with peers

‘They’ve got girlfriends, boyfriends, new friends, and even kind of new in-jokes that I don’t get, you know’. [Sara].

Unfamiliar perceptions of the body interacted tremendously with participation in occupational life. The adolescents described their typical everyday lives before and after they became ill. Like their peers, they had earlier been active and performed leisure activities, such as dancing, horseback riding, playing music or football or participating in other sports activities. ‘I love to dance! It was … it really was what I used to do’. [Christine]. Some of them previously had high ambitions within their favorite activities, and they had struggled to accept that these goals now seemed unachievable. Alternatively, they now were performing quiet and less demanding activities, such as using a computer, watching television and movies, and knitting and embroidery. Such changes in occupational life separated them from their friends, who did not share the informants’ new interests. The new interests and occupations in everyday life represented a contrast to their lives before they became ill and what they had expected their lives to be. They missed casual and, for some, also apparently insignificant, taken-for-granted occupations and all the activities they used to do. They missed living an ordinary life and being spontaneous without having to consider their bodies and thereby continuously be reminded of their occupational limitations. ‘Definitely… there are lots of things I miss. I kind of miss being able to do something spontaneously! And I miss … I kind of miss, well, not having any worries at all’. [Sara]. They also felt sad for not being able to participate in leisure activities, such as playing football: ‘Well, it was a bit hard because it was my favorite sport, after all. Well, my dad and uncles and well, everyone … it’s kind of part of everyone’s genes being active, so it is not easy’. [Martin]. The participants shared experiences of time passing, even months, without even noticing. All of their attention was drawn towards the daily challenges with which they had to deal, and they had no capacity to keep up with the ordinary lives of their peers.

 

[Dolphin]

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

 

[Dolphin]

Even if they were able to spend a few hours at school every week, they were cut off from sharing time with their peers and were unable to behave as spontaneously and creatively as their peers. They felt forgotten and often left alone and shut out, and they were sad for the loss. Some friends also rejected them by not being interested in talking to them any longer and simply going away. ‘But I suppose this is the point where you find out who your real friends are’. [Marianne].

 

[Dolphin]

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

The participants used various strategies to manage everyday life. They learned ways to make sense of the bodily sensations that they perceived. Problems with speech, memory and concentration were interpreted to signify tiredness, which indicated that it was necessary to take a rest. Thus, worries about such sensations were not in the fore any longer, and the participants used these experiences to guide them in how to manage everyday life situations. In turn, this strategy provided them with some control over both the illness and their everyday lives. They had learned to choose some activities over others, to take breaks to regain energy and to rest before and after demanding activities. In this way, they were rebuilding another occupational life. Predictable and limited participation in activities now became important to be able to maintain an acceptable way of living.

 

[Dolphin]

The importance of having relationships and interactions with friends was recurrently talked about; not only now when the participants were ill but also in the future, when they had recovered and were well again.

--

Nevertheless, all of the participants believed that they would be well in a few years, as one of them said: ‘So when I’m 25, maybe I’ll think, “oh man, I had ME when I was … ten years ago”. You know, I want to study music. Becoming a musician’s my dream, you know, being able to make a living like that’. [Andreas]. One participant considered herself to have recovered over a five year period: ‘Well, I just have to do it … because if not, I guess I would … because I think I would go crazy, to be honest, if I … because I just have to believe that I’ll get better’. [Christine].Their future life plans could be to work as a journalist, to study medicine abroad, to work at a garage or to sail around the world: ‘I actually think that I, someday, at some point in life … that I’ll, you know, get a sailboat and sail around most of the world. I hope I’m not ill then, that I’m completely well and able to study and … move on with life’. [Marianne].

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.