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

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Presentation on theme: "ME/CFS Australia (Vic, Tas, NT) www.mecfs-vic.org.au Solving the Puzzle."— Presentation transcript:

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

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

3 ME/CFS Australia (Victoria) May 12 Florence Nightingale birthday

4 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) Central Nervous System

7 ME/CFS Australia (Victoria) 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 7

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

11 ME/CFS Australia (Victoria)

12 How do you get ME/cfs? ACUTE ONSET –Following:  a viral infection – dysfunction in the body’s immune system to combat infection (Ebstein Barr 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 ME/CFS Australia (Victoria) 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 Australia (Victoria) ME/CFS Research Funding compared with related disorders

15 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) What its like to have M.E? 16

17 ME/CFS Australia (Victoria) What’s it like to have M.E www.youtube.com/watch?v=qBriPTFOtmY

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

19 ME/CFS Australia (Victoria) Prognosis /outcomes A chronic illness …….. what is recovery ? A chronic illness …….. what is recovery ? Accurate prediction not possible Accurate prediction not possible Better outcome with 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, 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 Severity of early illness often an indicator Few regain 100% level of previous health Few regain 100% level of previous health A relapsing and remitting condition A relapsing and remitting condition Some get better, some get worse Some get better, some get worse

20 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) Diagnosis How ?

23 ME/CFS Australia (Victoria) 23

24 ME/CFS Australia (Victoria) Post Exertional Neuroimmune Exhaustion It is the hallmark symptom

25 ME/CFS Australia (Victoria) Symptoms for a diagnosis 1.Post Exertional Neuroimmune exhaustion (PENE) 2.Fatigue 3.Pain 4.Neurocognitive Impairment 5Sleep. Disturbance 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

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

27 ME/CFS Australia (Victoria) 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 Gu t food intolerance – intestinal dysbiosis Faecal Fungi, parasites, overgrowth prevotella, H2s lactate producing bacteria Saliva Cortisol 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 ME/CFS Australia (Victoria) Ref : Chronic fatigue syndrome treatments website

29 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) Session Break – 15 minutes

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

32 ME/CFS Australia (Victoria) How a young person may present with ME/cfs in school SIGNS Missing lots of time from school Lack of concentration and participation/depression and agitated / emotional 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

33 ME/CFS Australia (Victoria) PUSH CRASH CYCLE 33

34 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) 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 ME/CFS Australia (Victoria) Assisting a young person with M.E 1.Be curious and listen to the needs of the young person and their family – do not be judgemental 2.Establish what their symptoms are 3.Establish what is the student’s ‘rating’ according to Bell’s ability/disability scale. 4.Establish an understanding of the student’s ‘energy envelope’ – their available energy. 5.Use ‘Jelly Beans’ as a concept for understanding the student’s ‘energy envelope’ 6.Embrace the concept of ‘Pacing’ within the school program –

38 ME/CFS Australia (Victoria) Assisting a young person with ME 7.Develop a Pacing Plan with the school Independent Learning Program. 8.Incorporate school strategies across the curriculum and school activities to reflect the young person’s ‘energy envelope’ 9.Adjust assignments, tests and work demands accordingly. 10.Review the ‘Pacing Plan’ fortnightly to check for appropriate school strategies and increase activity levels ‘very marginally’ in time increments of 15minutes.

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

40 ME/CFS Australia (Victoria) 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’ 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 ME/CFS Australia (Victoria) Tess’s Story

42 ME/CFS Australia (Victoria) Tess’s Story http://www.youtube.com/watch?v=s9J-IjCgR_E A Case Study

43 ME/CFS Australia (Victoria) School Strategies 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 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.

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

45 ME/CFS Australia (Victoria) SCHOOL RESOURCE The VCE AND VCAL ADMINISTRATIVE HANDBOOK 2012 http://www.vcaa.vic.edu.au/Documents/handbo ok/AdminHand2012-PartC.pdf

46 ME/CFS Australia (Victoria)

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.

48 ME/CFS Australia (Victoria)

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

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

51 ME/CFS Australia (Victoria) Quotes  The treatment of today’s ME/CFS patients is comparable to that of lobotomy patients decades ago, ……when the full history of ME/CFS is written one day, we will be ashamed of ourselves Prof.Dr. Ola Saugstad, Professor Pediatrics Who Advisor  I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that. Norwegian Directorate of Health Nov 2011 TV2 channel public Apology

52 ME/CFS Australia (Victoria) Voices from the Shadows 52

53 ME/CFS Australia (Victoria) Voices from the Shadows http://www.youtube.com/watch?v=fxZG4QVk O2k http://www.youtube.com/watch?v=fxZG4QVk O2k

54 ME/CFS Australia (Victoria) References

55 The End Thank you for your participation


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