ME/CFS Australia (Vic, Tas, NT)

1. www.mecfs-vic.org.au ME/CFS Australia (Vic, Tas, NT) Solving the Puzzle

2. Contact Details • Laurence Hennessy • Health Promotions Program Co-ordinator • Ph: 9791 3100 • http://www.mecfs-vic.org.au

3. May 12 Florence Nightingale birthday

4. What’s in a name? Myalgic (Muscle Pain) Encephalomyelitis (Inflammation of the brain and spinal cord) Central Nervous System Neurological disorder – ICD 10, G.93.3, World Health Organisation (WHO) 1969

5. What is ME/cfs • Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome • Chronic Fatigue Syndrome • It is not fatigue, It is not chronic fatigue • It is an invisible disease/disability • Myalgic Encephalomyelitis/cfs is a complex, chronic, multi system disorder

6. Central Nervous System

7. ME/cfs is not ….. • Other chronic illness or illness that has fatigue • Sports over-training • Vitamin/mineral deficiency • Over worked overstressed and fatigue • Depression and fatigue • Cancer and fatigue • MS and Fatigue • Hypothyroidism and fatigue • Sleep problems and fatigue • Bipolar with associated fatigue • Diabetes and fatigue

8. Who gets ME/CFS • All socio-economic groups & nationalities – however a predominance in those of celtic origin… • approximately • 25% < 20 years • 50% 20-49 years • 10% > 50 years • Ratios pre and post puberty - • PRE: Equal proportion of Male and Female up to the age of 12. Suggestion that oestrogen may be a factor which fits in with the leaky gut influence more likely. Testosterone protects against ‘leaky gut’. • POST: Female: male 4:1

9. Who gets ME/cfs? • Children as young as 5 have been diagnosed however, diagnosis dependant upon the skill of the paediatrician. • The symptoms of ME/CFS may progress more slowly in young children than in teenagers and adults • Royal Children’s Hospital (Victoria) – mean age 15 of participants through their program. In a Canadian Study the range was between 11 – 12.

10. Prevalence Rates • 2-7 per 1,000 (RACGP,2003) • 38,000 in Vic • 180,000 in Australia • ~ 0.4 – 1% POPULATION (International Consensus Primer for Medical Practitioners 2012) • 20,000 – 50,000 in Vic • 92,000 - 230,000 in Australia • Estimated Over 4 million USA …… ?? • UK. And europe – millions.\ • Incidence in School population? • Incidence increasing – more awareness….

12. How do you get ME/cfs? • ACUTE ONSET –Following: • a viral infection – dysfunction in the body’s immune system to combat infection (EbsteinBarr virus, enterovirus, human herpesvirus, candida alboens • Immunisation, anaesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals and rarely blood transfusions • Gradual Onset: • Accumulated stress – physical and emotional. • Genetic predisposition

13. What is the cause? There is no known cause for this disorder. The little research that is being undertaken has identified possible relationships however, more research needs to be undertaken. This is a major dilemma as lack of research, results in lack of medical understanding. This does not help patients with this condition in terms of proper ‘diagnosis’ and ‘treatment’. Leading to stigmatisation, isolation, frustration

14. ME/CFS Research Funding compared with related disorders

15. Research findings & theories • ME/CFS – is a chronic, complex, multi system disorder. • research supports ME/CFS as an autoimmune disease • Across all subtypes: Mytochondria Dysfunction – cellular level – this has implications across all body systems. • Many CFS subtypes: viral, gut dysbiosis, cardiovascular, fibromyalgia,

16. What its like to have M.E?

17. What’s it like to have M.E www.youtube.com/watch?v=qBriPTFOtmY

18. Impacts upon ADL’S • Cooking/eating/preparing meals • Cleaning/light housework • Socialising/friendships • Personal hygiene/showering orthostatic intolerance /Dressing • Transferring from bed to chair, and back getting to toilet • Moving around (as opposed to being bedridden) • Taking medications • Shopping groceries /clothes /bank /managing money /bill payment • Using the telephone /Use of communication devices – WIFI problems • Using technology – light sensitivity stopping computer use • Care of pets /child rearing/ managing a home • Community mobility /Travel /Financial management • Health management and maintenance, talking to health professionals • Safety & emergency responses • Add to this possibility of multiple chemical sensitivity • Accommodation issues

19. Prognosis /outcomes • A chronic illness …….. what is recovery ? • Accurate prediction not possible • Better outcome with • Early diagnosis, Family, friends, school and work believe, Understand condition, Accept condition vs deny or trivialise, self management & discipline with routine and energy usage, • Severity of early illness often an indicator • Few regain 100% level of previous health • A relapsing and remitting condition • Some get better, some get worse

20. Prognosis for young people • In the Royal Children’s Hospital 2009 study: 60% reported a functional ability rating of 7.6/10. • The illness ranged in length from 1 year to 15/16 years – the average length of the illness was 5 years . It was not a cumulative illness; periods of wellness and sickness. • Of the 60% of those who reported recovery, 1/3 had to consciously monitor their activities. • 90% completed or intended to complete post-secondary schooling – despite missing so much school.

21. Prognosis for young people • A thirteen year study in the UK of children and adolescents with ME/CFS indicated that approximately 80% had satisfactory outcomes. 37% were symptom-free and 40% had symptoms that persisted in mild to moderate forms. • Generally children who have milder symptoms are more likely to recover, but the prognosis of an individual case cannot be predicted with certainty. (Bell DS, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics 107(5):994-998, May 2001)

22. Diagnosis How ?

24. Post Exertional Neuroimmune Exhaustion It is the hallmark symptom

25. Symptoms for a diagnosis 6 Neurosensoryhypersensitivit eg vision, depth perception, poor co-ordination 7. Immune/Gastrointestinal/ genitourinary impairments eg flu like symptoms, gastro, ibs, 8. Cardio/respiratory/loss of Thermostatic stability/intolerance to food medications • Post Exertional Neuroimmune exhaustion (PENE) 2. Fatigue 3. Pain 4. Neurocognitive Impairment 5 Sleep . Disturbance

26. Is there a diagnostic test that proves me/cfs? • No conclusive diagnostic test • Under research for & specificity Urine hydrogen sulphide metabolite test • NK cells (Natural Killer cells) – showing promise – low volume and functionality (QLD – Griffith’s Universtity)

27. Tests for Abnormalities • Virology many • Immune markers • ↓NK cell function & ↑cytoxicity • Bloods low ESR, altered haematocrit elevated AST/ALT, low urate, altered ferritin low vit D, low alkaline phosphatase, low lymphocytes abnorm NK ratio, altered b cells altered interleukins, thyroid • Gut food intolerance – intestinal dysbiosis • Faecal Fungi , parasites, overgrowth prevotella , H2s lactate producing bacteria • SalivaCortisol • Urine *H2S Th1/Th2 shift • Brain SPECT Scans • MRI – brain/spine • Orthostatic intolerance • Sleep Studies (↓stage 4 sleep • Exercise tolerance test (International Consesus Primer for Medical Practitioners 2012. Pg 11)

28. Ref : Chronic fatigue syndrome treatments website

29. Treatment Approaches – one size does not fit all • Handful of specialists in Melbourne that diagnose and/or treat ME/cfs. • Many GPs are sceptical of the disease and wont make a diagnosis. • Treatment approaches vary between practitioners: • Investigating gut dysbiosis - dietary supplements • treating the symptoms – pain/sleep/cognitive fog/fatigue – medications. • Graded Exercise Therapy and Cognitive Behaviour Therapy - works for some not all • Pacing – working within your energy envelope (long term benefits) • Multidiscipline Care Approach – Royal Children’s Hospital, Royal Talbot Hospital - Kew.

30. Session Break – 15 minutes

31. How a young person may present at school with ME/cfs SIGNS MISINTERPRETATION Looks normal ( only see students on their ‘good days’) Confusion and scepticism by teachers • Outward looks well if not a bit pale • Symptoms come and go – vary in intensity from day to day/hr to hr.

32. How a young person may present with ME/cfs in school SIGNS MISINTERPRETATION malingerer – faking being sick The reality: Post exertional malaise - cash – bed for a few days to a week) / fatigue / sleep dysfunction / pain Not interested / bored Reality: Cognitive Dysfunction – inability to recall information/read/recall names/sensory overload/sensitivity to sound and light/dyslexia /depression and anxiety • Missing lots of time from school • Lack of concentration and participation/depression and agitated / emotional

33. PUSH CRASH CYCLE

34. What is PACING • Pacing is an alternative to push/crash. In push/crash you live in response to symptoms, with pacing, you gain some control and predictability over your symptoms with careful planning and monitoring of symptoms. • It is a more planned and routine approach to your lifestyle in which ‘rest’ and ‘routine’ play a critical role.

35. Pacing Strategies • Develop a detailed understanding of your limits • Monitor daily activity – keep within limits • Establish priorities • Take scheduled rest breaks (when well) • Have short activity periods • Switch between cognitive, social and physical tasks • Be sensitive to the time of day • stop all activity once ‘warning signs’ appear • Expand ‘energy envelope’ slowly over time.

36. Triggers • Pain, Cognitive Dysfunction, sleep problems, fatigue and other related symptoms are all interrelated. • All symptoms exaccerbate when: • the person goes outside their energy envelope – ie push themselves. • Is exposed to viruses • Is exposed to a trigger – varies between individuals ie. sensory overload • Is exposed to ‘stress’/emotional vulnerabilities • Pacing aims to minimise relapses and symptom flare up

37. Assisting a young person with M.E • Be curious and listen to the needs of the young person and their family – do not be judgemental • Establish what their symptoms are • Establish what is the student’s ‘rating’ according to Bell’s ability/disability scale. • Establish an understanding of the student’s ‘energy envelope’ – their available energy. • Use ‘Jelly Beans’ as a concept for understanding the student’s ‘energy envelope’ • Embrace the concept of ‘Pacing’ within the school program –

38. Assisting a young person with ME • Develop a Pacing Plan with the school Independent Learning Program. • Incorporate school strategies across the curriculum and school activities to reflect the young person’s ‘energy envelope’ • Adjust assignments, tests and work demands accordingly. • Review the ‘Pacing Plan’ fortnightly to check for appropriate school strategies and increase activity levels ‘very marginally’ in time increments of 15minutes.

39. CFS & Fibromyalgia Disability/Ability Rating Scale 100 Fully recovered. Normal activity level with no symptoms. 90Normal activity level with mild symptoms at times. 80Near normal activity level with some symptoms. 70 Able to work full time but with difficulty. Mostly mild symptoms. 60 Able to do about 6-7 hours of work a day. Mild to mod s/s 50 Able to do about 4-5 hours a day of work or similar at home. Daily rests required. Symptoms mostly moderate. 40Able to leave house daily. Mod symptoms on average Able to do 3-4 hr /day of work/ activity like housework, shop, computer. 30Able to leave house several times a week. Moderate to severe symptoms mostly. Able to do about 2 hrs/ day of work at home or activity like housework, shopping, using computer. 20 Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day. 10 Mostly bedridden. Severe symptoms. 0 Bedridden constantly. Unable to care for self.

40. SEVERITY • MILD 35% and above • Able to work /school full time but invariably never back to original activity levels • MODERATE 40% • Able to do some work but need regular RESTS • Able to get out of house maybe every day or second day but for limited times other wise will suffer post- exertional malaise or a ‘crash’ • SEVERE 25% and below • Unable to leave house maybe bedridden or unable to care for themselves • May need to be bathed or naso-gastric feeding

41. Tess’s Story

42. Tess’s Story A Case Study http://www.youtube.com/watch?v=s9J-IjCgR_E

43. School Strategies Larger print texts Taxi vouchers/disabled parking Extention for assignments Extended time for exams Rest breaks incorporated within subjects/exams Change physical settings i.e no classes upstairs Choice of testing – avoid multiple choice. • Incorporate a ‘pacing plan’ within the Individual Education Plan • Allow for part time study/reduced hrs/distance ed/home tutoring or a combination of • Reduce number of subjects/ • Classroom assistance: scribe/laptop/text to audio/ taped classes

44. Outcome of Royal Children’s Hospital Long Term Study 1991 - 2009 helpful Mgt Strategies UnhelpfulMgt Strategies Not being believed Delay in diagnosis School not being helpful Family and friends offering advice/cure Not being receptive to the emotional issues • Being believed • Feeling supported • Having some control over symptoms • Having information • Having contact with others The best predictor for functional outcomes is continued engagement with education. Social connectedness – key. Important to stay in the loop socially.

45. SCHOOL RESOURCE The VCE AND VCAL ADMINISTRATIVE HANDBOOK 2012 http://www.vcaa.vic.edu.au/Documents/handbook/AdminHand2012-PartC.pdf

47. Distinguishing depression from ME/cfs • A distinguishing question to ask a student: If you were well what would you do? Most with M.E have no trouble providing a raft of ideas. Such a response is very different from a person with depression. They will struggle to see any future goals or aspirations.

49. ECONOMIC cost • Total est. $4 billion Australia p.a. • World wide? Cost to Individual • Family • Work 20-40% unable to work • Loss of career, ability to parent, ability to achieve potential – loss and grief unfathomable • Health budgets • Reynolds et al 2004 • Jason et al 2008

50. ME/CFS Australia (Vic, Tas, NT) est. 1980 • Not for Profit… rely on memberships, donations • Telephone Support and Information • Closed Facebook pages for Young People and their families • April 2013 – beginning ONLINE Self Management Course for young people. • National ME/CFS Journal - Emerge • Support groups • Self Management Courses • Reduction of Social Isolation Link-up program • Awareness : acceptance, research, information & care