Candidate for the Federal seat of
Dear
I am writing to you today to ask what your party will be doing in the next Parliament to assist the
almost half a million people in Australia who are directly affected either as sufferers from ME/CFS
or their carers.
ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in Australia
There are estimated to be some 140,000 ME/CFS Australian sufferers (more prevalent than AIDS
or Lung Cancer). This represents an annual cost to the Australian economy of around $3.8bn
Overview of ME/CFS

Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a
neurological disease in the World Health Organization’s International Classification of
Diseases (ICD). (The two terms “Myalgic Encephalomyelitis” and “Chronic Fatigue Syndrome”
have become interchangeable so this illness is commonly referred to as “ME/CFS”)

The illness is characterised by neurological, gastrointestinal, cardiovascular and myoarthralgic
features. Severe forms can present with paresis, seizures, intractable savage headache, and
life threatening complications.

The many symptoms presented by ME/CFS sufferers complicate diagnosis and treatment by
most GP’s. These symptoms range from muscle aches & pains; neuro-cognitive dysfunction
(e.g. poor concentration & memory); gastro-intestinal symptoms (e.g. irritable bowel);
orthostatic intolerance (e.g. low blood pressure); etc.

The name “chronic fatigue syndrome”, actually understates the substantial disability of ME/CFS
which can extend to the wheelchair- or bed-bound, requiring 24 hour care.

Given the cost of ME/CFS to the community there is a distinct lack of research funding in
Australia. ME/CFS Societies and related groups rely heavily on overseas research for
information.

It’s known that prior to onset of ME/CFS, sufferers were usually well and leading active lives.
Their onset of ME/CFS resulted from some event, such as a viral illness. Many recover (with
diminished capability) to rejoin the main community and take up their schoolwork, join the
workforce, etc.

People with ME/CFS can be affected for 2 – 10 years, though it is known that a number remain
debilitated for longer periods, such as 20 years, and require full time care. Many of our
members fit that category of long-term sufferers, and at least one has had the illness for 30
years.
Significant Issues facing ME/CFS communities:

Lack of understanding of the illness by the Medical profession and division within the medical
community on treatment and management of ME/CFS.
This lack of understanding sets ME/CFS apart from other chronic illnesses, such as MS,
Asthma, diabetes, etc. which in turn complicates management of the illness and the ability to
develop prevention strategies within the community.
The Canadian ME/CFS Consensus Clinical Guidelines provide a way forward to address this
lack of understanding and management of the illness.

Difficulties of correct diagnosis of the illness: using the CDC figures above, some 84% (5 of 6)
sufferers are initially mis-diagnosed. Such mis-diagnosis can result in inappropriate medical
management of the illness that can exacerbate the severity of the condition.

Lack of official recognition by the Department of Health and Aging that ME/CFS is a ‘disability’:
this has led to poverty and extraordinary. un-necessary suffering for people who are far too
disabled to work yet unable to receive entitlements.

Lack of support for groups dedicated to assisting those with ME/CFS.: for instance, the
ME/CFS Society of SA receives nil government funding and exists solely on charity and
members' subscriptions. Note: should you wish to know more about this illness, which affects
directly or indirectly many thousands of South Australians, the ME/CFS Society of SA maintains
an outstanding website at http://www.sacfs.asn.au/index.html The Canadian ME/CFS Consensus
Clinical Guidelines are able to be downloaded from the front page of the site.

Current Australian research is based largely on academic data. It does not take account of
“best practice” primary research carried out overseas or within Australia.
What do the ME/CFS Societies want to see during 2007/08?

Official recognition by the Department of Health and Aging that ME/CFS is a ‘disability’

Improved Australian diagnosis and management of ME/CFS through the use of the Canadian
ME/CFS Consensus Clinical Guidelines

Provision of funds and access to expert resources to improve support services to ME/CFS
sufferers and their carers, to fund research into ME/CFS, and to raise awareness within the
community on management and prevention strategies

Provision of funds for core funding for a Research and Reference Centre to study all aspects of
Q fever and rickettsial infections and associated post infection chronic fatigue syndromes by
Professor Barrie Marmion AO, Q Fever Research Group & Professor Stephen Graves
Australian Rickettsial Laboratory, Hunter Area Pathology Service University of Newcastle.
Could you please outline for me the steps you and your party will be taking in the new Parliament
to assist this hugely disadvantaged group of electors and their families.
Yours Sincerely
[Name and Date]