Interventions in pediatric chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review, 2013, Knight, Scheinberg, Harvey

[Hutan]

2013 paper
Sarah J Knight 1, Adam Scheinberg, Adrienne R Harvey


Abstract
Purpose: A range of interventions have been used for the management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in children and adolescents. Currently, debate exists as to the effectiveness of these different management strategies. The objective of this review was to synthesize and critically appraise the literature on interventions for pediatric CFS/ME.

Method: CINAHL, PsycINFO and Medline databases were searched to retrieve relevant studies of intervention outcomes in children and/or adolescents diagnosed with CFS/ME. Two reviewers independently selected articles and appraised the quality on the basis of predefined criteria.

Results: A total of 24 articles based on 21 studies met the inclusion criteria. Methodological design and quality were variable. The majority assessed behavioral interventions (10 multidisciplinary rehabilitation; 9 psychological interventions; 1 exercise intervention; 1 immunological intervention). There was marked heterogeneity in participant and intervention characteristics, and outcome measures used across studies. The strongest evidence was for Cognitive Behavioral Therapy (CBT)-based interventions, with weaker evidence for multidisciplinary rehabilitation. Limited information exists on the maintenance of intervention effects.

Conclusions: Evidence for the effectiveness of interventions for children and adolescents with CFS/ME is still emerging. Methodological inadequacies and inconsistent approaches limit interpretation of findings. There is some evidence that children and adolescents with CFS/ME benefit from particular interventions; however, there remain gaps in the current evidence base.

Keywords: Adolescent; Child; Chronic fatigue syndrome; Cognitive behavior therapy; Fatigue; Intervention; Myalgic encephalomyelitis; Rehabilitation.

http://www.ncbi.nlm.nih.gov/pubmed/23643337 Paywall

 

[Hutan]

Associate Professor Sarah Knight is a pediatric neuropsychologist and ME/CFS researcher based in Melbourne Australia.

She mentioned this paper in 2019 in an interview with MEAction.
https://www.meaction.net/2016/04/13/meet-the-scientists-dr-sarah-knight/

Do you think there is strong enough evidence to say that patients should be treated with cognitive behavioural therapy and graded exercise therapy for recovery?
I am not in a position to comment on whether there is strong enough evidence for the effectiveness of these therapies for adults with ME/ CFS.

Our team published a systematic review in 2013 which investigated the evidence for interventions for children and adolescents with ME/CFS. Our findings indicated that evidence for the effectiveness of interventions for children and adolescents with ME/CFS was still emerging. Methodological inadequacies and inconsistent approaches limited the interpretation of findings. The review found that there was some evidence that children and adolescents with ME/CFS benefit from particular interventions; however, there remained gaps in the evidence base. Clearly, more research is required to determine whether these interventions are of benefit or not for children and adolescents with ME/CFS.

Here is our publication: Interventions in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review.

She carefully notes that she isn't commenting about CBT and GET for adults. But she seems happy to stand by her 2013 study and provide a link to it, noting that 'The review found that there was some evidence that children and adolescents with ME/CFS benefit from particular interventions; however there remained gaps in the evidence base'.

She finished with 'Clearly, more research is required to determine whether these interventions are of benefit or not for children and adolescents with ME/CFS.'

I am not clear if she has prescribed, and continues to prescribe, CBT and GET to the young people with ME/CFS in her care. It seems likely.


She works at the Victorian Paediatric Rehabilitation Service & Murdoch Children's Research Institute. The Victorian Paediatric Rehabilitation Service operates Chronic Fatigue Services at two Melbourne children's hospitals including inpatient programmes. I know 10 years ago the clinic was offering programmes incorporating behaviour therapy and GET.

In 2023, it was noted about the Victorian Paediatric Rehabilitation Service's programmes in general (not just for chronic fatigue syndrome) that
'Some of the VPRS programs are more physiotherapy-led, while others are psychology-led.'

 

[Utsikt]

'The review found that there was some evidence that children and adolescents with ME/CFS benefit from particular interventions; however there remained gaps in the evidence base'.

Given what we now know about the quality of those studies from NICE (her review is paywalled), I’m a bit concerned about how open-label studies with subjective outcome measurements can classify as «some evidence».