Transcript CFS Presnetation Part 1

Paediatric CFS/ME
Master Class
Esther Crawley
@ The Min
In this talk
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What is CFS/ME?
Who gets it, making a diagnosis
NICE ways of treating CFS/ME
Recent research findings
Difficult cases
@ The Min
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?
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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 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
80
76.9
69.2
61.5
57.7
57.7
53.8
50
50
Over 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
85.6
71.6
73.4
46.6
42.5
67.2
55
55.2
55.9
@ The Min
What symptoms?
Under 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
80
76.9
69.2
61.5
57.7
57.7
53.8
50
50
Over 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
85.6
71.6
73.4
46.6
42.5
67.2
55
55.2
55.9
@ The Min
What symptoms?
Under 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
80
76.9
69.2
61.5
57.7
57.7
53.8
50
50
Over 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
85.6
71.6
73.4
46.6
42.5
67.2
55
55.2
55.9
@ The Min
What symptoms?
Under 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
80
76.9
69.2
61.5
57.7
57.7
53.8
50
50
Over 12 (%)
Memory
Headaches
Muscle pain
Abdominal pain
Tender LNs
Joint pain
Sore throat
Dizziness
Nausea
85.6
71.6
73.4
46.6
42.5
67.2
55
55.2
55.9
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Management of symptoms
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
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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
What are the problems with
sleep?
@ The Min
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
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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
@ The Min
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
@ The Min