CFS in YPWCs aged 11 and younger

[Guest guest]

CFS and FMS can and does exist in children. This article pertains primarily

to CFS, but can apply to FMS as well since they are seemingly related and

about 75% of people diagnosed with FMS fit the criteria for CFS and vs/vs.

I have been diagnosed with FMS and believe I have both as well.

Since these illnesses can be hereditary, keep an eye on your children for

symptoms. My daughter started showing symptoms of FMS as a young child and

was diagnosed as " developing fibro " at age 10. She was officially diagnosed

with FMS at age 16 and recently began taking medication for her insomnia.

In my opinion, now at age 18 she shows as many symptoms of CFS as Fibro...

(i.e. sore throats, swollen glands, mono twice, lots of infections and

viruses, etc).

Shari Ferbert

www.affter.org

Source: Co-Cure...

Source: Archives of Disease in Childhood Preprint

Date: January 11, 2008

URL: http://adc.bmj.com/cgi/content/abstract/adc.2007.126649v1

You can respond to this article at:

http://adc.bmj.com/cgi/eletter-submit/adc.2007.126649v1

Chronic fatigue syndrome in children aged 11 years old and younger

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na M Davies(1) and Esther M Crawley(2)

1 Department of Women and Children's Health

Southmead Hospital

Bristol BS10 5NB

2 Corresponding Author:

Dr Esther Crawley

Centre for Child and Adolescent Health

Hampton House, Cotham Hill

Bristol BS6 6JS

Telephone: 0117 331 0891

Email: esther.crawley@...

Accepted 26 November 2007

Published online January 11, 2008

Abstract

Aim

To describe children who presented to the Bath paediatric CFS/ME service

under the age of 12.

Method

Inventories measuring fatigue, pain, functional disability, anxiety,

family history and symptoms were collected prospectively for all children

presenting to the Bath CFS/ME service between September 2004 and April

2007. Data from children who presented to the service under the age of 12

were described and compared to those who presented at age 12 or older.

Results

178 children (under the age of 18) were diagnosed as having CFS/ME using

the RCPCH criteria out of 216 children assessed. The mean age at

assessment for children with CFS/ME was 14.5 years old (SD 2.9). 32 (16%)

children were under 12 years old at the time of assessment, four children

were under 5 years old and the youngest child was 2 years old. Children

under 12 were very disabled with mean school attendance of just over 40%

(average 2 days a week), Chalder Fatigue score of 8.29 (CI 7.14-9.43

maximum possible score=11) and pain visual analogue score of 39.7

(possible range 0-100). Comparison with the children aged 12 or older

showed that both groups were remarkably similar at assessment. 24/26

children with complete symptom lists, would have been diagnosed as having

CFS/ME using the stricter adult CDC criteria.

Conclusion

Disability in the under 12 age group was high, with low levels of school

attendance, high level of fatigue, anxiety, functional disability and

pain. The clinical pattern seen is almost identical to that seen in older

children and the majority of children would also be diagnosed as having

CFS/ME using the stricter adult definition.

Key words

Chronic fatigue syndrome, CFS/ME, ME

Summary statement

Children in primary school can be very disabled by chronic fatigue

syndrome or ME (CFS/ME). The clinical presentation in this age group

(under 12 years old) is almost identical to that in older children.

Introduction

CFS/ME is defined in the Royal College of Paediatrics and Child Health

Evidenced Based Guideline for the Management of CFS/ME as " generalised

fatigue persisting after routine tests and investigations have failed to

identify an obvious underlying cause " 1.

Although some papers make reference to CFS/ME starting at a young age,

(for example some studies suggest a mean age of onset of 8.7-11.6

years2-5), other reports have excluded children under the age of 126, and

to date there are no studies describing how these young children present

to clinicians.

In this paper we describe a cohort of 32 children who presented with CFS/

ME whilst at primary school. We then compare them to children presenting

in the same time frame but aged 12 years or over, in terms of symptoms at

presentation, fatigue, anxiety, disability, pain and school attendance.

Methods

The Bath paediatric CFS/ME service provides assessment and treatment for

over 150 children and young people each year. The service covers Bath,

Bristol, West Wiltshire, Somerset and Gloucestershire. This region has

over 400,000 children aged 5 to 19 years according to the 2001 Census.

Prior to assessment, the following inventories were collected: 11 item

Chalder fatigue scale, SF36 (physical function subscale) for functional

disability, Spence Childrens Anxiety Scale (SCAS), on children 14 years

old and younger, pain visual analogue scale and school attendance. The 11

item Chalder fatigue scale was scored using the bimodal method for scoring

each item (0 for " less than usual " and " no more than usual " and 1 for

" more than usual " and " much more than usual " ). Children score 1 for " yes

limited a lot " and 3 for " no not limited at all " . Children with the most

disability therefore score 10 whereas those with the least disability

score 30. The SCAS measures the frequency with which a child experiences

symptoms relating to anxiety. There are four possible answers for each

question: never (score 0), sometimes (score1), often (score 2) and always

(score 3). School attendance is measured with a single item question on

how much they attend school as a percentage of possible school attendance.

At assessment children are asked about the presence or absence of symptoms

using a symptom list derived from the CDC criteria7 and the RCPCH

guidelines1. Time to assessment is calculated as the time from the first

onset of symptoms to the assessment date. Screening investigations are

carried out on all children as recommended in the RCPCH guidelines1.

Data was analysed for children (under the age of 18) who were assessed by

the CFS/ME service between April 2005 and April 2007, and had a diagnosis

of CFS/ME made at assessment. The notes were reviewed to check whether an

alternative diagnosis had been made at follow up.

Inventories were excluded entirely for analysis if there was more than one

missing item. Items were counted as missing if there were two answers

given. For the symptom check list, data were included even if the symptom

list was incomplete. For the children under 12, if the parent and or child

were uncertain whether a symptom was a problem, the data were left as

missing and the remaining symptoms were included in the analysis.

The data were analysed using STATA 9.2 for windows. Children under 12 were

compared to children aged 12 and over using the Fishers exact test

(percentage with each symptom, male to female ratio) or the unpaired T

test (fatigue score, pain, SF36, number of symptoms present and time at

school).

Results

216 children were under 18 years old at the time of assessment and 40 of

these were 11 years old or younger. Overall 82% of children assessed had

CFS/ME confirmed at assessment.

The mean age (sd) at assessment for children with CFS/ME was 14.5 (2.9)

years old (SD 2.9). The age distribution for all children attending for

assessment is shown in figure 1.

Of the 40 children assessed who were under 12, 32 (80%) had CFS/ME. Three

of these were under 5 years old and the youngest child was 2 years old. 22

(68%) children were female and 30 (93%) children described themselves as

White Caucasian. Median time from symptom onset to assessment was 12

months (range 3 to 60 months).

Of the 8 children who did not have CFS/ME, five children no longer had

fatigue by the time they were seen in clinic or were not disabled by it;

one was given a diagnosis of anxiety; one a diagnosis of chronic pain

syndrome and one was undergoing further investigations for alternative

causes for fatigue at the time of assessment.

Missing data

The three children who were under 5 were unable to complete the

inventories. These children are therefore not included in the analysis of

fatigue, pain, anxiety or functional disability. Of the 29 remaining

children, 3 children did not complete any inventories. One additional

child did not complete the SF36 scale, one the SCAS, and two did not

complete the pain VAS. The poorest inventory for completion was the SCAS.

One child missed out 9 items and one 17 items, and both these children

were excluded from analysis.

Out of 32 children, three did not have a symptom check list completed, one

child had 10 symptoms missing and two children had 13 symptoms missing.

In the children aged 12 and over there were 37 children out of 146 with a

diagnosis of CFS/ME who did not return any inventories. Of the remainder

who completed some of the inventories, 13 did not complete the Chalder

fatigue scale and in five, there were 2 or more missing items and so they

were excluded. 11 did not complete the SF36 and 4 were incomplete (and

therefore excluded). The HADS was only sent to children aged 14 and over.

In this age group, 43 out of 136 did not complete the HADS. The SCAS was

initially used only for children up to 14 years of age up to 2007 but was

so useful it was extended to all children seen in clinic in 2007. In

children over 12 there were 34 who did not complete the SCAS at all and 7

who were excluded because the inventory was incomplete leaving 68 for

analysis.

Those who did not complete any inventories were compared to those who

completed some or all of them. There were no differences in age or gender

between the two groups.

Analysis of the inventories (table 1) showed that children under 12 were

severely affected, with a mean school attendance of just over 40% (average

2 days a week), and a mean Chalder Fatigue score of 8.3 (CI 7.14 to 9.4

maximum possible score=11). They also experienced a significant amount of

pain, with a mean visual analogue score for pain of 39.7 (possible range

0-100). The most common symptom experienced was post-exertional malaise

(100%) followed by un-refreshing sleep (96%) and subjective memory

impairment (80%) (See table 2 for full symptom list).

Comparison of fatigue, anxiety, pain, functional disability, number of

symptoms, time at school and time to assessment between the two groups of

children demonstrated that they were remarkably similar in all areas. The

younger children appeared to be more anxious and yet attending slightly

more school but these results were not statistically significant between

the two groups.

Comparison of the frequency of symptoms between the two groups of children

demonstrated that the two groups were very similar (table 2). There were

no significant differences between either group for any symptom frequency.

26 children under 12 had completed symptom lists taken at assessment and

of these, 24 would have been given a diagnosis of CFS/ME using the

stricter criteria for adults from the Centers of Disease Control and

prevention (CDC). The two that would not have been given a diagnosis did

not have CFS/ME for 6 months at the time of assessment (3 months and 5

months respectively).

Discussion

This is the first detailed study describing a cohort of primary school

aged children with CFS/ME. All 32 children fulfilled the RCPCH definition

of CFS/ME defined as " generalised fatigue persisting after routine tests

and investigations have failed to identify an obvious underlying " cause " 1.

24 of the 26 children that had completed symptom lists taken at assessment

would also have been diagnosed as having CFS/ME using the stricter CDC

definition which requires you to have 6 months of fatigue and 4 additional

symptoms (see table 3).

18% of children with CFS/ME diagnosed using the RCPCH criteria seen during

the time period studied were under 12 at the time of assessment. This is

consistent with other studies that have reported that CFS/ME is less

common in younger children compared to older children. 4;8;9

Children under 12 were very similar to those who were 12 and over in

symptom presentation but also in fatigue, pain, anxiety, school attendance

and functional disability scores.

The youngest child was 2 years old at the time of assessment and a total

of four children were under 5 years of age at assessment. Diagnosis of

CFS/ME in children under fiver years of age is very difficult as

subjective description of symptoms is less reliable. Diagnosis was made on

what appeared to be disabling fatigue according to parental report using

the RCPCH criteria. In each case, the clinical diagnosis of CFS/ME was

made by two paediatricians (referring paediatrician and one of the

authors) who were experienced in the assessment and management of CFS/ME.

For children under 5 a symptom list was not recorded. In all of the

children, the parents had not previously heard of CFS/ME and all routine

screening tests were negative. All four children had extensive

investigation to exclude other causes of fatigue and all tests were

negative. All four children made a good recovery when they were treated

using a family-based graded activity programme.

Limitations of this study

The main limitation of this study is the missing data. This is more of a

problem in the older children then in the younger children. However, there

were no differences in age or gender between those who completed some or

all of the inventories when compared to those who completed none.

Conclusion

CFS/ME exists in children under 12 and in children as young as 2 years

old. There appears to be no difference in clinical symptomatology between

children under 12 and older children. The majority of children with CFS/ME

in primary school would have had a diagnosis of CFS/ME using the stricter

adult CDC criteria.

Acknowledgements

Thanks to Prof Alan Emond and Dr Hunt for help in writing this paper.

Thanks to all the families who participated.

Competing interests

Dr Crawley is a medical advisor for the Association of Young people with ME

(AYME).

Funding

This research was funded by The Linbury Trust

The Corresponding Author has the right to grant on behalf of all authors and

does grant on behalf of all authors, an exclusive licence (or non-exclusive

for

government employees) on a worldwide basis to the BMJ Publishing Group Ltd

and

its Licensees to permit this article to be published in Archives of Disease

in

Childhood editions and any other BMJPGL products to exploit all subsidiary

rights, as set out in our licence

http://adc.bmjjournals.com/ifora/licence.pdf

Tables

Table 1. Comparison of symptoms and disability between children under 12

with

those aged 12 and over

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Under 12 12 and over Mean Difference

Mean (SD) Mean (SD) (95% CI)

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Chalder Fatigue 8.3 (3.0) 8.7 (2.7) -0.4 (-1.5, 0.8)

SCAS* 34.4 (17.6) 27.0 (19.4) 7.4 (-1.5, 16.4)

Pain VAS 39.7 (27.8) 46.1 (31.1) -6.5 (-20, 7.1)

SF 36 19.3 (4.9) 19.7 (5.3) -0.3 (-2.6, 1.9)

Total number of symptoms 8.1 (2.2) 8.3 (2.6) -0.2 (-1.2, 0.9)

Time at school (as percentage 43.3 (21.4) 34.7 (22.8) 8.6 (-1.9, 19)

of possible total)

Time to assessment (months) 20.4 (16.7) 24.7 (19.6) -4.3 (-12.3, 3.6)

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* children were only asked to complete the Spence anxiety scale up to 14

years

old. At 14 and older, children were asked to complete the Hospital Anxiety

Depression Scale (HADS).

Table 2. Symptom List

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Under 12 Over 12 P value

Symptoms No with symptom (%) No with symptom (%)

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Post exertional malaise 26/26 (100%) 135/140 (96.4%) 1

Un-refreshing sleep 24/26 (92%) 134/140 (95.7%) 0.6

Subjective memory problems 21/28 (75%) 116/139 (83.6%) 0.29

Headaches 21/26 (80.8%) 106/141 (75.2%) 0.6

Muscle Pain 19/27 (70.4%) 103/141 (73.1%) 0.82

Abdominal Pain 16/26 (61.5%) 68/138 (49.3%) 0.29

Tender Lymph Nodes 13/26 (50%) 62/140 (44.3%) 0.67

Joint Pain 16/27 (59.2%) 94/140 (67.1%) 0.51

Sore Throat 16/26 (61.5%) 80/140 (57.1%) 0.83

Dizziness 13/26 (50%) 79/137 (57.7%) 0.52

Nausea 14/27 (51.9%) 81/139 (58.3%) 0.67

Noise Sensitivity 10/26 (38.5%) 48/136 (35.3%) 0.82

Light Sensitivity 7/27 (25.9%) 33/136 (24.3%) 0.81

Hypersensitivity to touch 1/26 (3.85%) 20/137 (14.6%) 0.2

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Table 3. Requirements to fulfil the 1994 CDC definition for CFS/ME

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The presence of fatigue for a minimum of 6 months

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The fatigue must be: Clinically evaluated

Unexplained

Persistent or relapsing

New or definite onset (not lifelong)

Not the result of ongoing exertion

Not substantially relieved by rests

Results in substantial reduction in previous

levels of occupational, educational, social

or

personal activities

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Four or more of the Substantial impairment in short-term memory

or

following symptoms: concentration

Sore throat

Tender cervical or axillary lymph nodes

Muscle pain

Multiple joint pain without joint swelling

or

redness

Headaches of a new type, pattern or severity

Unrefreshing sleep

Postexertional malaise lasting more than 24

hours

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--

Figure caption

Figure 1

Graph showing age at assessment for both age groups. After 16 years of age,

some children are seen by the adult service if they are no longer in full

time

education.

Reference List

(1) Royal College of Paediatrics and Child Health. Evidence Based Guideline

for the Management of CFS/ME (Chronic Fatigue Syndrome/Myalgic

Encephalopathy) in Children and Young People. 2004. London.

Ref Type: Report

(2) JF, Nisenbaum R, L, Reyes M, Reeves WC. Chronic

fatigue syndrome and other fatiguing illnesses in adolescents: a

population-based study. J Adolesc Health. 2004; 35(1):34-40.

(3) Farmer A, Fowler T, Scourfield J, Thapar A. Prevalence of chronic

disabling fatigue in children and adolescents. Br J Psychiatry. 2004;

184:477-481.

(4) Jordan KM, Ayers PM, Jahn SC, KK, Huang CF, Richman J et al.

Prevelance of Fatigue and Chronic Fatigue Syndrome-Like Illness in

Children and Adolescents. J Chronic Fatigue Syndrome. 2000; 6(1):3-21.

(5) Bell KM, Cookfair D, Bell DS, Reese P, L. Risk factors associated

with chronic fatigue syndrome in a cluster of pediatric cases. Rev

Infect

Dis. 1991; 13 Suppl 1:S32-S38.

(6) Rangel L, Garralda ME, Levin M, H. The course of severe chronic

fatigue syndrome in childhood. J R Soc Med. 2000; 93(3):129-134.

(7) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The

chronic fatigue syndrome: a comprehensive approach to its definition and

study. International Chronic Fatigue Syndrome Study Group. Ann Intern

Med. 1994; 121(12):953-959.

(8) Lloyd AR, Hickie I, Boughton CR, Spencer O, Wakefield D. Prevalence of

chronic fatigue syndrome in an Australian population. Med J Aust. 1990;

153(9):522-528.

(9) Dobbins JG, Randall B, Reyes M, Steele L, Livens EA, Reeves WC. The

Prevalence of Chronic Fatiguing Illnesses Among Adolescents in the

United States. J Chronic Fatigue Syndrome. 1997; 3(2):15-27.

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© 2008 BMJ Publishing Group Ltd.

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