Management of chronic fatigue syndrome/myalgic encephalomyelitis in a pediatric population: A scoping review, 2019, Collard and Murphy

Andy

Andy

Retired committee member
Abstract

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) negatively impacts the quality of life for children with the condition. Although up to 2% of children have CFS/ME, the bulk of research investigates adults with CFS/ME. Using the PRISMA extension for a scoping review and the work of Arksey and O’Malley (2005), a scoping review was conducted of all relevant peer-reviewed research investigating nutrition, exercise, and psychosocial factors within a pediatric population diagnosed with CFS/ME.

Key themes found were nutrition and dietary components, exercise therapy, psychosocial factors, and multifaceted treatment. Nutrition was explored on its own as a tool to decrease symptoms; however, there were very few studies found to examine nutritional deficiency or treatment with those under the age of 18. Graded exercise and resistance training improved fatigue severity and symptoms of depression in adolescents with CFS/ME. Research exploring psychosocial factors of CFS/ME presented attributes that could lead to being diagnosed as well as barriers to treatment. The multifaceted treatment undertaken typically consists of graded activities/exercise, cognitive behavioral therapy, nutritional advice, and family sessions. This has shown to increase school attendance and decrease the severity of the fatigue for adolescents. Minimal literature exploring CFS/ME within a prepubescent population presents the need for further research.
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Open access at https://journals.sagepub.com/doi/10.1177/1367493519864747
 
I just did a quick search for 'lightning' to see if they chose to ignore the problems with SMILE. They did:

CBT was often combined with another therapy tool, for example, the Lightning Process (LP) or biofeedback (Al-Haggar et al., 2006; Crawley et al., 2013; Crawley et al., 2017; Viner and Hotopf, 2004). Crawley et al. (2013, 2017) conducted an RCT of children and adolescents (aged 12–18 years) investigating standard medical care (SMC) which included CBT, compared to SMC plus the LP. Findings showed a decrease in symptoms (e.g., fatigue, physical function, anxiety) over time (6 and 12 months) in the LP plus SMC treatment. As seen in other intervention research, there was also an increase in school attendance by 12 months.
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They're using it as evidence of "the positive benefits of a cognitive-behavioral approach":

As the positive benefits of a cognitive-behavioral approach have been shown (Al-Haggar et al., 2006; Crawley et al., 2013; Crawley et al., 2017; Knight et al., 2013; Rimes et al., 2014), research has also discussed methods of adapting the treatment through the use of technology.
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Wonder why this charity would be funding work that promoted junk-science?

Acknowledgements
The authors are grateful to The Silk Trust for providing the support for this scoping review.
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similarly
In relation to exercise therapy, this review provided positive findings for the benefits of exercise for adolescents with CFS/ME in reducing physical and cognitive symptoms and subsequently improving QOL.
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seems to rely on Gordon Lubitz 2009 'promising outcomes of an adolescent Chronic fatigue syndrome inpatient program', Journal of Paediatrics and child health

hardly conclusive
 
Another pile of junk. I looked up the lead author. All her previous publications were about exercise treatments for epilepsy.

They have completely uncritically jumbled together a pile of articles found in a literature search. I doubt the authors have any idea what CFS is - it's just words to them. Might as well be analysing breakfast cereals on the basis of what's written on the packets.

Literature searches are all very well for beginner research students to get a feel for what's out there, but unless they are prepared to dig into things like diagnostic criteria, problems with questionnaire based studies, sample sizes, lack of replication, p-hacking, cherry picking etc, the outcome is junk.
 
Esther12 said:
Wonder why this charity would be funding work that promoted junk-science?
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From Financial Year ending 2017 (the last details available).
Objectives and Activities
a. Objectives

The objectives of Charity are such general charitable purposes as the Trustees may from time to time determine. The current policy adopted by the Trustees is to support charities nominated by the Founder Trustee and particularly supporting medical and optical research projects.

b. Public benefit

The Trust acts solely as a grant making body and the majority of its grants are to bodies which are themselves registed charities.

Achievements and performance

a. Review of activities

Grants during the year totalled £97,031 and included contributions to the following charities:

University of London
Bournemouth University
The royal society of medicine
MSA Trust
BNA events
Norville group
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http://apps.charitycommission.gov.uk/Accounts/Ends28/0001089728_AC_20170331_E_C.PDF

Charity Commission details on them, https://beta.charitycommission.gov.uk/charity-details/?regid=1089728&subid=0

From the limited information available the trust seems to be a vehicle for one persons philanthropy, so it's probably more a matter of personal connections.
 
I was reading about the OMF funded collaborative centre at Harvard, and yet more abnormalities the OMF team have found in their severe study, and thought next time I see a GET/CBT study I will mention these new findings. Such as a notably missing good gut bacteria, and more discussion of a genetic abnormality. HR has this article on its site. Can't put link up right now.

Wilfull blindness on the part of BPS colleagues. They really do ignore a large body of evidence. Evidence which continues to increase.
 
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