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ME/CFS Australia Ltd
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ME/CFS SOUTH AUSTRALIA INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:

PO Box 322,
Modbury North,
South Australia 5092

Phone:
1300 128 339

Office Hours:
Monday - Friday,
10am - 4pm
(phone)

ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

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Response from the ALP’s Nicola Roxon MP

Monday 26 November 2007

Ballot boxPolly Chaser Dr Tim Hill (PhD) emailed Nicola Roxon MP and received a reply.

Here is Tim’s email to Nicola Roxon MP:

 

From: Tim Hill
Sent: Thursday, 25 October 2007 8:51 PM
To: Roxon, Nicola (MP)
Subject: ME/CFS and the new parliament

Ms Nicola Roxon MP
Shadow Minister for Health
Parliament House
CANBERRA ACT 2600

Dear Madam

I write to you as a patient of 2 years with the condition known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the hope that as the potential Minister for Health in the new parliament, this invisible illness might be taken seriously.

In Australia, there are estimated to be some 140,000 ME/CFS patients making the condition more prevalent than AIDS or Lung Cancer. It is estimated that the annual cost to the Australian economy is around $3.8bn through the loss of working hours and the cost to the health care system.

Fortunately I live in South Australia which is the only state or territory to adopt the best practice definition for ME/CFS, namely the 2003 Canadian Clinical Criteria. This means that patients in the rest of

Australia suffer from the use of psychiatric treatment methodologies based on the 1994 research definition for CFS. Nevertheless, patients throughout Australia continue to suffer a lack of understanding and recognition of the illness not to mention the loss of income, friendships and so on.

To address some of the issues faced by patients and carers of those with ME/CFS, I seek your support in the new parliament for the following:

1) The adoption of the Canadian Clinical Criteria nationwide.

2) The issuing of a ministerial directive to the the Department of Health and Ageing to list ME/CFS as a disabling invisible illness.

3) Currently the national and state ME/CFS societies exist entirely on memberships and donations. I request the sum of approximately $250,000 to be divided between them to be used to setup a phone counselling service and brochure publication for patient carer/support and the like.

4) Patients and patient groups reject the continual support for psychiatric methodologies in ME/CFS and desire that any new funding administered by the NHMRC (for research into ME/CFS) be directed at a biomedical approach and that any successful proposals be contingent on the use of the Canadian Clinical Criteria.

Yours Sincerely
Dr Timothy Hill (PhD)

[address supplied]
(resident in the electorate of Makin)

Ph: [phone number supplied]

 

And here is the reply from Luke Buckmaster, adviser to Nicola Roxon MP:

 

Subject: RE: ME/CFS and the new parliament
Date: Fri, 23 Nov 2007 13:26:44
From: Buckmaster, Luke (N. Roxon, MP)
To: Tim Hill

Dear Tim,

Please accept my profound apologies for the delay in responding to your email. We have been extremely busy with the election campaign and I am afraid I lost sight of your email in my inbox.

Thank you for getting in contact in regard to Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome.

While, at this stage, Labor has no plans along the lines you mention, we recognise that Myalgic Encephalomyelitis (ME) is a serious medical condition affecting the lives of many thousands of Australians and their families and carers.

Federal Labor also recognises that ME has a significant economic and social impact, in addition to its effect on the lives of sufferers and those close to them.  Australians suffering from ME and their families and carers deserve the support of the entire community.

Kevin Rudd has announced a number of measures to improve the state of our nation’s health system and to end the blame game in health. This includes plans for GP Super Clinics in local communities and a National Health and Hospitals Reform Plan.  Details of Labor’s commitments can be found at the ALP website - www.alp.org.au.

Federal Labor is acutely aware of the needs of Australians suffering from ME. A Rudd Labor Government will work with sufferers of ME to develop practical measures which provide real assistance to Australians suffering from ME and their families and carers, and contribute to our understanding of this condition.

Once, again, many thanks for getting in contact in regard to this important issue.

Yours sincerely

Luke
--------------------------
Luke Buckmaster
Adviser
Office of Nicola Roxon MP
Parliament House
Canberra ACT 2600
Phone: 02 6277 2039
Fax: 02 6277 8405

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