@ The Min Paediatric CFS/ME Master Class Esther Crawley

@ The Min In this talk 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

@ The Min 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

@ The Min Who gets it? How common is it? Which socio-economic class? Which Ethnic Group? Male:female ratio?

@ The Min 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

@ The Min Even children under 12?

@ The Min Children under 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

@ The Min What causes CFS/ME?

@ The Min 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.

@ The Min What do children complain of? In addition to fatigue?

@ The Min What symptoms? Under 12 (%)Over 12 (%) Memory 80Memory 85.6 Headaches 76.9Headaches 71.6 Muscle pain 69.2Muscle pain 73.4 Abdominal pain 61.5Abdominal pain 46.6 Tender LNs 57.7Tender LNs 42.5 Joint pain 57.7Joint pain 67.2 Sore throat 53.8Sore throat 55 Dizziness 50Dizziness 55.2 Nausea 50Nausea 55.9

@ The Min What symptoms? Under 12 (%)Over 12 (%) Memory 80Memory 85.6 Headaches 76.9Headaches 71.6 Muscle pain 69.2Muscle pain 73.4 Abdominal pain 61.5Abdominal pain 46.6 Tender LNs 57.7Tender LNs 42.5 Joint pain 57.7Joint pain 67.2 Sore throat 53.8Sore throat 55 Dizziness 50Dizziness 55.2 Nausea 50Nausea 55.9

@ The Min What symptoms? Under 12 (%)Over 12 (%) Memory 80Memory 85.6 Headaches 76.9Headaches 71.6 Muscle pain 69.2Muscle pain 73.4 Abdominal pain 61.5Abdominal pain 46.6 Tender LNs 57.7Tender LNs 42.5 Joint pain 57.7Joint pain 67.2 Sore throat 53.8Sore throat 55 Dizziness 50Dizziness 55.2 Nausea 50Nausea 55.9

@ The Min What symptoms? Under 12 (%)Over 12 (%) Memory 80Memory 85.6 Headaches 76.9Headaches 71.6 Muscle pain 69.2Muscle pain 73.4 Abdominal pain 61.5Abdominal pain 46.6 Tender LNs 57.7Tender LNs 42.5 Joint pain 57.7Joint pain 67.2 Sore throat 53.8Sore throat 55 Dizziness 50Dizziness 55.2 Nausea 50Nausea 55.9

Management of symptoms

@ The Min Patterns to watch out for Missing school regularly due to “tonsillitis”, recurrent viral infections, etc. Regularly missing Thursdays or Fridays Regularly missing Mondays

@ The Min Diagnosis and initial management

@ The Min

Need to exclude other causes of fatigue Screening bloods Exclude primary depression

@ The Min What are the screening investigations?

@ The Min 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

@ The Min

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

@ The Min

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

@ The Min 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

@ The Min What do you do about sleep?

@ The Min 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

@ 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