Comorbidities treated in primary care in children with CFS/ME (Norway)

Effi

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http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0527-7

Comorbidities treated in primary care in children with chronic fatigue syndrome / myalgic encephalomyelitis: A nationwide registry linkage study from Norway

Inger J. BakkenEmail authorView ORCID ID profile, Kari Tveito, Kari M. Aaberg, Sara Ghaderi, Nina Gunnes, Lill Trogstad, Per Magnus, Camilla Stoltenberg and Siri E. Håberg

BMC Family Practice BMC series – open, inclusive and trusted
201617:128 DOI: 10.1186/s12875-016-0527-7 © The Author(s). 2016
Received: 9 April 2016 Accepted: 26 August 2016 Published: 2 September 2016

Abstract
Background
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a complex condition. Causal factors are not established, although underlying psychological or immunological susceptibility has been proposed. We studied primary care diagnoses for children with CFS/ME, with children with another hospital diagnosis (type 1 diabetes mellitus [T1DM]) and the general child population as comparison groups.

Methods
All Norwegian children born 1992–2012 constituted the study sample. Children with CFS/ME (n = 1670) or T1DM (n = 4937) were identified in the Norwegian Patient Register (NPR) (2008-2014). Children without either diagnosis constituted the general child population comparison group (n = 1337508). We obtained information on primary care diagnoses from the Norwegian Directorate of Health. For each primary care diagnosis, the proportion and 99 % confidence interval (CI) within the three groups was calculated, adjusted for sex and age by direct standardization.

Results
Children with CFS/ME were more often registered with a primary care diagnosis of weakness/general tiredness (89.9 % [99 % CI 88.0 to 91.8 %]) than children in either comparison group (T1DM: 14.5 % [99 % CI: 13.1 to 16.0 %], general child population: 11.1 % [99 % CI: 11.0 to 11.2 %]). Also, depressive disorder and anxiety disorder were more common in the CFS/ME group, as were migraine, muscle pain, and infections. In the 2 year period prior to the diagnoses, infectious mononucleosis was registered for 11.1 % (99 % CI 9.1 to 13.1 %) of children with CFS/ME and for 0.5 % (99 % CI (0.2 to 0.8 %) of children with T1DM. Of children with CFS/ME, 74.6 % (1292/1670) were registered with a prior primary care diagnosis of weakness / general tiredness. The time span from the first primary care diagnosis of weakness / general tiredness to the specialist health care diagnosis of CFS/ME was 1 year or longer for 47.8 %.

Conclusions
This large nationwide registry linkage study confirms that the clinical picture in CFS/ME is complex. Children with CFS/ME were frequently diagnosed with infections, supporting the hypothesis that infections may be involved in the causal pathway. The long time span often observed from the first diagnosis of weakness / general tiredness to the diagnosis of CFS/ME might indicate that the treatment of these patients is sometimes not optimal.
 

Simon

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Children with CFS/ME (n = 1670) were identified in the Norwegian Patient Register (NPR) (2008-2014)
...In the 2 year period prior to the diagnoses, infectious mononucleosis was registered for 11.1 % (99 % CI 9.1 to 13.1 %) of children with CFS/ME and for 0.5 % (99 % CI (0.2 to 0.8 %) of children with T1DM [type 1 diabetes, reference group). Of children with CFS/ME
I'd always assumed glandular fever/infectious mono was a much more common cause of mecfs in children.
 
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What an interesting and well written paper.

It's just a small thing, but the flow chart in fig. 1 , and the way the tables are formatted made this so much easier for someone like me to understand.

It's interesting that the Diagnoses relating to infections shows such a difference between groups even up to 2 years before the ME diagnosis.
 

Dolphin

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I'd always assumed glandular fever/infectious mono was a much more common cause of mecfs in children.
That was for within 2 years after diagnosis. The figure for ever was higher:
Elevated frequencies of all diagnoses related to infection were observed in the CFS/ME group. In particular, infectious mononucleosis was far more frequent in this group (17.2 %) than in the control groups (T1DM: 3.7 %, general child population: 2.9 %). Influenza, acute tonsillitis, “strep throat”, and pneumonia were also more frequent in the CFS/ME group.
Also not everyone would necessarily have been tested for glandular fever/infectious mononucleosis.
 

Simon

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Elevated frequencies of all diagnoses related to infection were observed in the CFS/ME group. In particular, infectious mononucleosis was far more frequent in this group (17.2 %) than in the control groups
So that's still 80% of cases not being from glandular fever, which surprises me - but Ive never found good data before this study.

Also not everyone would necessarily have been tested for glandular fever/infectious mononucleosis.
It's been around for years. I can't imagine doctors wouldn't test for mono - it's easy to do, probably cheap - if you have a chlid that ill, I'd have thought it would be one of the first they reach for.
 

Denise

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I am not saying this is the best possible data but here are some links on glandular fever/"mono"

Predictors of post-infectious chronic fatigue syndrome in adolescents

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956649/


Chronic Fatigue Syndrome Following Infectious Mononucleosis in Adolescents: A Prospective Cohort Study

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2756827/

And the IOM report discusses "mono" and ME in

http://www.nap.edu/read/19012/chapter/8

(this study ends in 2016)
A PROSPECTIVE STUDY OF CFS FOLLOWING INFECTIOUS MONONUCLEOSIS IN COLLEGE STUDENTS
https://projectreporter.nih.gov/pro...aram=&ddvalue=&ddsub=&cr=1&csb=default&cs=ASC
 

*GG*

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So that's still 80% of cases not being from glandular fever, which surprises me - but Ive never found good data before this study.
25% is the figure I have heard, so not much difference between 20 to 25. Not sure if the number is from anectodal evidence or a previous study.

GG
 

Simon

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25% is the figure I have heard, so not much difference between 20 to 25. Not sure if the number is from anectodal evidence or a previous study.

GG
Really interesiting - I'd love to know where are the other cases come from.

There's more evidence that mono isn't responsible for most childhood cases. Here's an age profile of CFS in kids, using the same Norwegian population database
Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012 |


Note the peak is mid-teens. Now here's one for mono. Note that, by contrast, the peak age for mono is early twenties.

mono profile.gif

If mono was responsiblle for most childhood cases, I would have expected the two profiles to be closer together (or perhaps as children become adults glandular fever is less likely to develop into CFS).
 
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BruceInOz

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Doesn't mono/glandular fever usually go unnoticed in younger kids as just a normal cold/flu? It might be just that it is only the older cohort that get prolonged symptoms that give cause to look for EBV.