Paediatric CFS/ME Master Class

1. Paediatric CFS/ME Master Class Esther Crawley @ The Min

2. 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

3. 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

4. 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

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

6. 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

7. Even children under 12? @ The Min

8. 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 @ The Min

9. What causes CFS/ME? @ The Min

10. 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

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

12. What symptoms? @ The Min

13. What symptoms? @ The Min

14. What symptoms? @ The Min

15. What symptoms? @ The Min

16. Management of symptoms

17. 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

18. Diagnosis and initial management @ The Min

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24. Need to exclude other causes of fatigue Screening bloods Exclude primary depression @ The Min

25. What are the screening investigations? @ The Min

26. 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 @ The Min

27. 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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30. 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

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32. Treatment • Management of symptoms • Sleep • Energy management: • Baseline, increase, rests, set backs • What we do: • Mood • Education

33. 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

34. What are the problems with sleep? @ The Min

35. Problems with sleep Difficulty getting off to sleep Difficulty waking up Poor quality sleep Day night reversal Excessive sleeping @ The Min

36. What do you do about sleep? @ The Min

37. 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

38. 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