Paediatric CFS/ME Master Class

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Paediatric CFS/ME Master Class

Esther Crawley

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In this talk

• What is CFS/ME?

• Who gets it, making a diagnosis

• NICE ways of treating CFS/ME

• Recent research findings

• Difficult cases

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What is in a name?

• Chronic fatigue syndrome– Long term, tiredness, collection of symptoms

• ME– Myalgia encephalitis/encephalopathy

• CFS/ME – designed by committee• Other names: post viral fatigue, glandular

fever, neurasthenia etc

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What is CFS/ME?

“ disabling fatigue without another cause”

• Probably the largest cause of long term school absence

• 10% of children house bound

• 1/3 of children no qualifications

• Probably only 1:10 get a diagnosis and access to treatment

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Who gets it?

• How common is it?

• Which socio-economic class?

• Which Ethnic Group?

• Male:female ratio?

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Who gets it?

• How common is it?– 1:100 children

• Which socio-economic class?– SE class 5 most common

• Which Ethnic Group?– Bangladesh

• Male:female ratio?– Children under 12: girls = boys

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Even children under 12?

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Children under 12

• 32 children with CFS/ME under 12

• 3 children under 5

• Time to assessment: 1.4 years

• Identical to older children: fatigue, disability, symptoms, clinical presentation

• Attend slightly more school

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What causes CFS/ME?

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What we know

• As with all chronic complex illnesses, CFS/ME is genetically heritable

• But requires an environmental stimulus:– EBV (glandular fever virus)– Infections – chest infections, etc.

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What do children complain of?

In addition to fatigue?

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What symptoms?

Under 12 (%) Over 12 (%)

Memory 80 Memory 85.6

Headaches 76.9 Headaches 71.6

Muscle pain 69.2 Muscle pain 73.4

Abdominal pain 61.5 Abdominal pain 46.6

Tender LNs 57.7 Tender LNs 42.5

Joint pain 57.7 Joint pain 67.2

Sore throat 53.8 Sore throat 55

Dizziness 50 Dizziness 55.2

Nausea 50 Nausea 55.9

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What symptoms?

Under 12 (%) Over 12 (%)

Memory 80 Memory 85.6

Headaches 76.9 Headaches 71.6

Muscle pain 69.2 Muscle pain 73.4

Abdominal pain 61.5 Abdominal pain 46.6

Tender LNs 57.7 Tender LNs 42.5

Joint pain 57.7 Joint pain 67.2

Sore throat 53.8 Sore throat 55

Dizziness 50 Dizziness 55.2

Nausea 50 Nausea 55.9

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What symptoms?

Under 12 (%) Over 12 (%)

Memory 80 Memory 85.6

Headaches 76.9 Headaches 71.6

Muscle pain 69.2 Muscle pain 73.4

Abdominal pain 61.5 Abdominal pain 46.6

Tender LNs 57.7 Tender LNs 42.5

Joint pain 57.7 Joint pain 67.2

Sore throat 53.8 Sore throat 55

Dizziness 50 Dizziness 55.2

Nausea 50 Nausea 55.9

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What symptoms?

Under 12 (%) Over 12 (%)

Memory 80 Memory 85.6

Headaches 76.9 Headaches 71.6

Muscle pain 69.2 Muscle pain 73.4

Abdominal pain 61.5 Abdominal pain 46.6

Tender LNs 57.7 Tender LNs 42.5

Joint pain 57.7 Joint pain 67.2

Sore throat 53.8 Sore throat 55

Dizziness 50 Dizziness 55.2

Nausea 50 Nausea 55.9

Management of symptoms

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Patterns to watch out for

• Missing school regularly due to “tonsillitis”, recurrent viral infections, etc.

• Regularly missing Thursdays or Fridays

• Regularly missing Mondays

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Diagnosis and initial management

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Need to exclude other causes of fatigue

• Screening bloods• Exclude primary depression

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What are the screening investigations?

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Screening investigations

• Screening– Blood: FBC, ESR/viscosity, CRP, U’s and E’s, LFT’s,

creatinine, Creatine kinase, Thyroid function, coeliac screen, ferritin, random glucose

– Urine - dip

Making a diagnosis

• Two important points:– Can have other illnesses as long as they don’t

explain the fatigue

– Start rehabilitation whilst waiting for results

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What NICE has changed

• Refer to paediatrician 6 weeks

• 3 months minimum for diagnosis

• Referral to specialist services:– Immediately if severely affected– 3 – 4 months if moderate– 6 months if mild

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Treatment

• Management of symptoms• Sleep• Energy management:

– Baseline, increase, rests, set backs

• What we do:– Mood– Education

Management of symptoms

• Nausea – Eat little and often, dry starchy foods

• Pain– Explanation :Phantom limb pain/pain pathway,

Functional imaging, Useful versus non useful– Strategies: Distraction; Baseline – re-educating brain;

Switching off brain– Drugs: Amitriptyline

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What are the problems with sleep?

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Problems with sleep

• Difficulty getting off to sleep

• Difficulty waking up

• Poor quality sleep

• Day night reversal

• Excessive sleeping

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What do you do about sleep?

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Dealing with sleep

• Explain why they cant sleep• Sleep restrict

– Same amount of sleep as their peers– Wake up an hour earlier every few days– No day time sleeps, go to bed later Sleep hygiene – Bedroom only for sleeping– Reduce stimulating activity before bed– Bedtime routine/bath/milky drink

• Medication

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Medication for sleep

• Melatonin– Doesn’t improve sleep architecture

• Amitriptyline– Pain and sleep– Theoretically improves sleep architecture– Start at 5mg 30 minutes before bed and

increase to max 20 to 30mg