Children's experiences of CFS/ME: a systematic review and meta-ethnography of qualitative studies

[Dolphin]

The predominant symptom is relentless fatigue unresolved by rest; this can be physical, mental and/or emotional and can lead to a lack of motivation.53

A bit annoying that mentioned. Some people with CFS can have a lack of motivation to try specific therapies didn't believe in or therapies that will take a lot of the precious energy e.g. graded exercise therapy. Some context would have been welcome.

 

[Dolphin]

A lack of medical advice led to too much rest or overextension making children feel worse.54

I wonder how many children really rest too much. It is of course hard to believe at the very optimal level but actually resting too much that caused them to feel worse.

The cited study is by Wyller who believes and graded activity and the like.

 

[Jonathan Edwards]

meta-ethnography thats a new word for me, sounds made up

Maybe we should not blame Dr Crawley too much for this since she clearly never read it. Otherwise she would have seen that Parslow RM cannot spell synthesise.

 

[Dolphin]

Diagnosis, advice and increasing awareness

Our synthesis revealed that reducing uncertainty through diagnosis, advice on management and validating the illness within children’s social networks helped children cope with the condition. Williams-Wilson53 found children to report a sense of relief following diagnosis. A study of children with CFS/ME attending a specialist service emphasised that recognition of the condition by specialists, along with advice on management reduced uncertainty and brought a sense of structure and normality back into children’s lives.55 Children reported improvements after learning to manage activity wisely to cope with fluctuating symptoms.54

There is no mention that these services can cause problems in at least some circumstances. Also no mention specifically about therapies like graded exercise therapy which might not help people to learn to manage their activity levels optimally.

The fact that Esther Crawley runs a clinic may bias what gets reported.

 

[Dolphin]

Forming coherent explanations for their illness gave children psychological agency to prove to others that they are not responsible for their condition. Hareide et al54 identified a ‘simple illness profile’ in some children with CFS/ME. These children have an outer attribution for the cause (physical causes— not being responsible for their condition) and an inner attribution of control (having psychological agency). This helped to decrease their experience of helplessness. Those with a ‘complex illness profile’ added psychological attributions to the cause of their condition and were able to integrate difficult feelings in their self-understanding to cope with their condition.

G1: ‘I think that I will get well. I hope so. I do not intend to do nothing the rest of my life’.54

They praise this quote but I'm not sure it is particularly praiseworthy. Some people get better and some don't and a lot of that is down to luck.

I think the authors may possibly be in a bit of denial about the long-term outcome in the condition, that many have ongoing impairments due to the illness.

 

[Dolphin]

Hope, personal growth and recovery The final construct in the synthesis is hope, personal growth and recovery. Although children’s future plans may have been altered, our synthesis revealed an expressed need to keep hopeful. Finding meaning in small activities such as spending time with friends created a balance with managing a difficult condition.48 51 53

When I’m dancing or singing then it’s like I’m in another world…I feel free! Especially now, when I’m ill…51

Dancing is usually fairly high energy. Not sure it is great as a regular activity for somebody with ME/CFS unless they are very mildly affected.

 

[Dolphin]

Many of the studies demonstrated how children with CFS/ME can experience personal growth, including learning how to manage their energy levels; having a new perspective on life; developing more compassion for others and wanting to raise awareness.47 54 This synthesis also highlighted the changes in children feeling better52 or recovered.47 When children with CFS/ME feel better, they report ‘feeling different’ and having more energy allowing them to feel like ‘doing more’.52 Getting back to a ‘normal’ adolescent life, including seeing friends and returning to hobbies led to positive hopes for their future.47 Children with CFS/ME can have a shift in their self-concept; a new appreciation for life and knowing themselves better.

I feel like I’ve benefited from having it, I know my personal boundaries, I know what I can and cannot do. . .I take advantage of everything.47

I don't find the underlined bits that interesting. It's hardly surprising when they feel better that they will have more energy allowing them to do more and it's hardly surprising that when they are able to do more and appear to be improving, that they would have positive hopes for the future.

 

[Dolphin]

In addition to general support from GPs, children and their families require specialist management and advice on activity from health professionals to help them manage their condition and function in the different spheres of their lives.

The scene to be more claiming this rather than it having come through from the evidence.

 

[Dolphin]

Anyway I have just picked out a few bits I am not unhappy with. However there are lots of bits that I think quite well capture the experience, too many for me to highlight I think.

 

[Snow Leopard]

They praise this quote but I'm not sure it is particularly praiseworthy. Some people get better and some don't and a lot of that is down to luck.

I think the authors may possibly be in a bit of denial about the long-term outcome in the condition, that many have ongoing impairments due to the illness.

"G1: ‘I think that I will get well. I hope so. I do not intend to do nothing the rest of my life’"

That was my view for many years. We can see how well that worked out for me...

Children* with rapid-onset illness simply have no conception of lifelong chronic illness - pretty much all children believe they are going to be healthy again.

*Like most adults.