1. @ The Min Energy management Boom-Bust versus baseline High and low energy Rest Examples

2. @ The Min

8. What is high energy? Physical Cognitive Emotional

9. @ The Min What is high energy? Physical –Walking, PE –Severely affected - getting out of bed, brushing hair etc Cognitive –School and home work, Computer, TV if engaged, Reading if difficult Emotional –Worries, Argument, self talk, Social stuff, Seeing Drs, CBT

10. @ The Min Good day/bad day Good dayBad Day Home tutor1 hour0 Computer4 hours0 Active TV2 hours30 mins Walk10 mins0 Shopping45 mins0

11. @ The Min Baseline Every day School work30 mins Computer2 hours Active TV1 hour Walk5 mins Going out20 mins

12. @ The Min Rest

13. @ The Min What is rest?

14. @ The Min Rest No physical or cognitive of emotional activity How? Deep breathing/ guided imagery/ progressive relaxation /meditation, yoga etc Postulated mechanisms: activates vagal nerve  pro-inflammatory cytokines

15. @ The Min

18. Education

19. @ 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

20. @ The Min Education Activity management in school or at home Discussion with school/home tutor over memory and attention problems Adaptations to lessons/learning

21. @ The Min In school Same every day means half days better than Monday/Wednesday/ Friday Watch out for the weekend bust Look at attendance records for Bust or “tonsillitis” every Thursday and Friday

22. @ The Min At home Should be having 3 to 5 hours a week Must be in one hour blocks Start with 5 to 15 minutes active work but with home tutor there When up to 1 hour a day every day increase physical exercise When 3 hours a day total, consider re- integration –Timing: lunch or fun lessons first

23. @ The Min Reintegration When can do 3 hours high energy Start at 1 hour a day and reduce total amount of activity by 2 hours Start fun lessons/ socialising and keep home tutoring going If anxious, wait until managing 5 hours high energy and start at 2 hours

24. @ The Min Exams You cant pace before exams Miss SATS and consider delaying others Train brain for exam time of day Exam conditions: –Quiet room and longer for exam –Able to get up and move about –Same time of day –± aids

25. @ The Min CBT? Arguably useful for everybody We use it for: –Anxiety –Low mood –Difficulty with rehabilitation programme –* 25 – 75% children mood disorder CFS/ME not in prior to developing CFS/ME Viner study,  risk in Chalder paper

26. @ The Min Do children get better?

27. @ The Min Outcome in children Evidence from follow up studies so far is up to 94% of children make a good or complete recovery Don’t know what happens if they don’t access a service Prognosis is improved if schools are supportive

28. Complicated cases

29. @ The Min What research are we doing?

30. @ The Min What research are we doing? Longitudinal cohort Epidemiology study Memory and attention study Anxiety in children with CFS/ME Severely affected Drug use in CFS/ME

31. @ The Min Longitudinal cohort Epidemiology study Memory and attention study Anxiety in children with CFS/ME Severely affected Drug use in CFS/ME

32. @ The Min Longitudinal cohort Pre-assessment: –Chalder fatigue, SF36, HADS, SCAS, drug use, (alcohol and smoking), school attendance, time of onset At assessment: –Symptom check list, family history, investigations Follow up: –6 weeks, 6 months and annually

33. @ The Min Longitudinal cohort 319 children –Of whom 253 children have CFS/ME and age < 18 –29% Male, Median age 14.7 –51.4% attend 20% or less of school Main factor associated with school attendance is disability not anxiety or fatigue

34. Memory study

35. @ 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

36. @ The Min Memory study Why did we do it? –Biggest problem after fatigue (81% in our cohort) –No studies in children What did we do? –Recruited children who had a problem with memory or attention –Used tests done in adult studies

37. @ The Min Memory and attention Adults with CFS/ME –problems with attention –response speed –information processing –recall of verbal and visual information –working memory deficits Functional magnetic resonance –use more extensive regions of the brain

38. @ The Min What did they say? Concentration: –“my mind wanders” “I don’t concentrate well, it doesn’t sink in” Memory: –“Things pop out of my head” “long term memory fine…finds it hard to remember what he did yesterday” Teachers: –“…loses the thread easily…”

39. @ The Min What did we find 20 children All had problems Most consistent problems in –auditory learning –divided attention

40. @ The Min Memory testing Worse: –Divided attention (p<0.001) –Auditory learning (p=0.01) –Sustained attention (p=0.04)