ME/CFS Society (SA) Inc. - ME/CFS Australia (Victoria)

ME/CFS Australia (Vic, Tas, NT)
Solving the Puzzle
Contact Details
• Laurence Hennessy
• Health Promotions Program Co-ordinator
• Ph: 9791 3100
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
May 12
Florence Nightingale birthday
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
What’s in a name?
(Muscle Pain)
(Inflammation of the brain and spinal cord)
Central Nervous System
Neurological disorder –
ICD 10, G.93.3, World Health Organisation (WHO) 1969
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
What is ME/cfs
Myalgic Encephalomyelitis/ Chronic Fatigue
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
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Central Nervous System
ME/CFS Australia (Victoria)
ME/cfs is not …..
ME/CFS Australia (Victoria)
Other chronic illness
or illness that has
Sports over-training
Over worked
overstressed and
Depression and
Cancer and fatigue
MS and Fatigue
Hypothyroidism and
Sleep problems and
Bipolar with
associated fatigue
Diabetes and fatigue
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Who gets ME/CFS
All socio-economic groups & nationalities – however a
predominance in those of celtic origin…
25% < 20 years
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
ME/CFS Australia (Victoria)
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.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
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….
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
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
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
ME/CFS Australia (Victoria)
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
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Research Funding compared with related disorders
ME/CFS Australia (Victoria)
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,
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
What its like to have M.E?
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
What’s it like to have M.E
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
• Impacts upon ADL’S
Cooking/eating/preparing meals
Cleaning/light housework
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
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
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
ME/CFS Australia (Victoria)
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 postsecondary schooling – despite missing so much
ME/CFS Australia (Victoria)
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
• Generally children who have milder symptoms
are more likely to recover, but the prognosis of
an individual case cannot be predicted with
(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)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
How ?
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Post Exertional Neuroimmune
It is the hallmark symptom
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Symptoms for a diagnosis
1. Post Exertional
exhaustion (PENE)
2. Fatigue
3. Pain
4. Neurocognitive
5 Sleep . Disturbance
6 Neurosensoryhypersensitivit
eg vision, depth perception,
poor co-ordination
7. Immune/Gastrointestinal/
genitourinary impairments
eg flu like symptoms, gastro,
8. Cardio/respiratory/loss of
stability/intolerance to food
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Is there a diagnostic test that proves
 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)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Tests for Abnormalities
•Virology many
•Immune markers
•↓NK cell function & ↑cytoxicity
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,
food intolerance – intestinal
Fungi , parasites, overgrowth
prevotella , H2s lactate producing
*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)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Ref : Chronic fatigue syndrome treatments website
ME/CFS Australia (Victoria)
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
• Treatment approaches vary between practitioners:
– Investigating gut dysbiosis - dietary supplements
– treating the symptoms – pain/sleep/cognitive fog/fatigue –
– Graded Exercise Therapy and Cognitive Behaviour Therapy works for some not all
– Pacing – working within your energy envelope (long term
– Multidiscipline Care Approach – Royal Children’s Hospital, Royal
Talbot Hospital - Kew.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Session Break – 15 minutes
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
How a young person may present at school
with ME/cfs
• Outward looks well if not
a bit pale
• Looks normal ( only see
students on their ‘good
• Symptoms come and go
– vary in intensity from
day to day/hr to hr.
• Confusion and scepticism
by teachers
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
How a young person may present with
ME/cfs in school
• Missing lots of time from
• malingerer – faking being sick
• Lack of concentration and
and agitated / emotional
• Not interested / bored
• The reality: Post exertional
malaise - cash – bed for a few
days to a week) / fatigue /
sleep dysfunction / pain
• Reality: Cognitive Dysfunction
– inability to recall
overload/sensitivity to sound
and light/dyslexia /depression
and anxiety
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
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
• It is a more planned and routine approach to
your lifestyle in which ‘rest’ and ‘routine’ play
a critical role.
ME/CFS Australia (Victoria)
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
• Be sensitive to the time of day
• stop all activity once ‘warning signs’ appear
• Expand ‘energy envelope’ slowly over time.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
• Pain, Cognitive Dysfunction, sleep problems,
fatigue and other related symptoms are all
• 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
ME/CFS Australia (Victoria)
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 –
ME/CFS Australia (Victoria)
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
9. Adjust assignments, tests and work demands
10. Review the ‘Pacing Plan’ fortnightly to check for
appropriate school strategies and increase activity
levels ‘very marginally’ in time increments of 15minutes.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
CFS & Fibromyalgia Disability/Ability Rating Scale
Fully recovered. Normal activity level with no symptoms.
Normal activity level with mild symptoms at times.
Near normal activity level with some symptoms.
Able to work full time but with difficulty. Mostly mild symptoms.
Able to do about 6-7 hours of work a day. Mild to mod s/s
Able to do about 4-5 hours a day of work or similar at home.
Daily rests required. Symptoms mostly moderate.
Able to leave house daily. Mod symptoms on average
Able to do 3-4 hr /day of work/ activity like housework, shop, computer.
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.
Able to leave house once or twice a week. Moderate to severe
symptoms. Able to concentrate for 1 hour or less per day.
Mostly bedridden. Severe symptoms.
Bedridden constantly. Unable to care for self.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
MILD 35% and above
Able to work /school full time but invariably never back to original activity
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’
25% and below
Unable to leave house maybe bedridden or unable to care for themselves
May need to be bathed or naso-gastric feeding
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Tess’s Story
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Tess’s Story
A Case Study
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
School Strategies
• Incorporate a ‘pacing
plan’ within the Individual
Education Plan
• Larger print texts
• Allow for part time
hrs/distance ed/home
tutoring or a combination
• Extention for assignments
• Reduce number of
• Change physical settings
i.e no classes upstairs
• Classroom assistance:
scribe/laptop/text to
audio/ taped classes
• Choice of testing – avoid
multiple choice.
• Taxi vouchers/disabled
• Extended time for exams
• Rest breaks incorporated
within subjects/exams
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Outcome of Royal Children’s Hospital
Long Term Study 1991 - 2009
helpful Mgt Strategies
Unhelpful Mgt Strategies
• Being believed
• Not being believed
• Feeling supported
• Delay in diagnosis
• Having some control over
• School not being helpful
• Having information
• Family and friends
offering advice/cure
• Having contact with
• 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.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Distinguishing depression from
• 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.
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
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
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Vic, Tas, NT)
Not for Profit…
est. 1980
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
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
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
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Voices from the Shadows
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
Voices from the Shadows
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
ME/CFS Australia (Victoria)
The End
• Thank you for your participation

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