‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME 2017 Crawley,Loades

[Sly Saint]

Abstract

Background: Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’. One-third of young people with CFS/ME have probable depression. Little is known about why depression develops, the relationship between depression and CFS/ME, or what treatment might be helpful.

Methods: We conducted nine semi-structured interviews with young people with CFS/ME (aged 13–17years, 8/9 female) and probable depression, covering perceived causes of depression, the relationship between CFS/ME and depression, and treatment strategies.

Results: Most thought CFS/ME caused depression. Many discussed a cyclical relationship: low mood made CFS/ME worse. A sense of loss was common. CFS/ME restricted activities participants valued and changed systemic structures, causing depression. There was no single helpful treatment approach. Individualised approaches using combinations of cognitive behavioural therapy (CBT), medication, activity management and other strategies were described.

Conclusion: This study suggests that depression may be secondary to CFS/ME in young people because of the impact of CFS/ME on quality of life. Clinicians treating young people with CFS/ME need to consider strategies to prevent development of depression, and research is needed into approaches that are effective in treating CFS/ME with co-morbid depression.

‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME (sagepub.com)

 

[Yann04]

‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause

to be fair when that is the definition, (I’m assuming this refers to 2007 NICE guidelines) we aren’t even talking about the same disease anymore.

 

[Arnie Pye]

This reminds me of the times that my parents told me in my teens that I couldn't be depressed because children had nothing to be depressed about, and therefore children couldn't suffer from depression.

 

[Hutan]

The majority of participants believed their CFS/ME to have been caused by a physical event, such as glandular fever, an operation to remove a kidney or appendix, kidney stones, tonsillitis or Hashimoto’s. The majority of participants (6 of the 9) felt that CFS/ME predated their low mood:

It’s normally fatigue for a while, get symptoms, and then having to limit myself and what I can do, and then that results in low mood cos I can’t do what I want to do. (YP1)

I suppose it’s the fatigue symptoms that come, sort of come up first . . . and then I sort of get the low mood with it or sort of after it. (YP3)

 

[Hutan]

The bit I have read has actually been pretty good, aside from a belief that CBT has a material impact on the disease itself. The conclusion in the abstract isn't bad.

Here's some commentary on some of those sweet secondary benefits of ME/CFS:

Education system. Almost all the participants described schools and colleges as inflexible, unhelp- ful, un-empathetic and invalidating. Again, participants related this to the specific nature of the condition – invisible, fluctuating, not widely known or recognised. Young people identified this as a cause of increased anxiety and low mood:

I was one of those rare species of child that actually enjoyed going to school . . . they had a student that enjoyed learning and they sort of took that away from me with the way they treated me. And I, it just kind of made me feel not worth it . . . they stopped paying attention to me and it kind of made me feel like a statistic or a problem that was going to affect their results table, and that was quite a horrible feeling really. (YP3)

Loss. A strong theme underpinning both the restriction in activity and the systemic changes was the theme of loss. The young people talked about the impact of their difficulties on the normative pro- cesses of being a teenager, and all the things associated with this: education, social life, family, self-identity and spontaneity:

 

[alktipping]

YP3 had very good insight into why our education system wilfully fail our young people as always box ticking leads to worse outcomes .

 

[bobbler]

to be fair when that is the definition, (I’m assuming this refers to 2007 NICE guidelines) we aren’t even talking about the same disease anymore.

No its - and this is ironic ‘lazy diagnoser diseases’ when they admit the criteria they’ve been encouraging

are there many chronic including serious diseases that don’t present with disabling fatigue? I mean even PEM makes sense when you think the defining feature is UNTREATED and then MALTREATMENT for long enough to create unnecessary secondary issues.

and then their obsession with writing all sorts to ensure those people never ever get heard or investigated in future so ‘they can’t be proven wrong’

‘by obvious tests’ .. I’d like them to narrow down how ‘narrow’ and how few important conditions they ‘could’ have ever picked up with those, and how unusual it would have used to have been to stop at those

 

[Amw66]

Abstract

Background: Paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has a prevalence of 0.4–2.4% and is defined as ‘generalised disabling fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause’. One-third of young people with CFS/ME have probable depression. Little is known about why depression develops, the relationship between depression and CFS/ME, or what treatment might be helpful.

Methods: We conducted nine semi-structured interviews with young people with CFS/ME (aged 13–17years, 8/9 female) and probable depression, covering perceived causes of depression, the relationship between CFS/ME and depression, and treatment strategies.

Results: Most thought CFS/ME caused depression. Many discussed a cyclical relationship: low mood made CFS/ME worse. A sense of loss was common. CFS/ME restricted activities participants valued and changed systemic structures, causing depression. There was no single helpful treatment approach. Individualised approaches using combinations of cognitive behavioural therapy (CBT), medication, activity management and other strategies were described.

Conclusion: This study suggests that depression may be secondary to CFS/ME in young people because of the impact of CFS/ME on quality of life. Clinicians treating young people with CFS/ME need to consider strategies to prevent development of depression, and research is needed into approaches that are effective in treating CFS/ME with co-morbid depression.

‘It’s personal to me’: A qualitative study of depression in young people with CFS/ME (sagepub.com)

No shit Sherlock .

 

[rvallee]

Too bad they never bothered saying this. Neither did Wessely after he first assumed it was depression, then found it wasn't. The vast majority of MDs think both are true, largely because of their work, which debunks the claims, but they never bothered saying out loud, let alone insisting that people stop saying that. They could have done a lot of good here, but chose not to, instead contributed to harm.