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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Response to Dr Andrew Southcott MP
Monday 5 November 2007
Lynda wrote back.
This is the letter Lynda wrote to Dr Andrew Southcott MP:
Dr. A. Southcott
Dear Dr. Southcott,
Re : Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
On 25th September I received the Health Minister’s response to my query regarding ME/CFS which was dated 4th June. Thank you for facilitating this action.
The ME/CFS Society (S.A.) Inc, of which I am a member, estimates that there are 587 ME/CFS sufferers resident in Boothby, which according to the Society’s calculations means that there are 2,300 voters in your electorate affected directly or indirectly by this condition.
As the current elected member representing these citizens nationally, you may wish to ponder the following facts.
1. The overwhelming severity of the many symptoms endured by sufferers of ME/CFS and association conditions (Fibromyalgia, Multiple Chemical Sensitivity, Rickettsia, Q Fever etc.) prevent the majority of these people from working.
2. People who have previously been energetic, hard working high achievers do not choose to drop out of their full, active and productive lives.
3. People who suffer from chronic illness have living expenses far greater than those incurred by non-sufferers. They are therefore dependent upon other for financial support.
4. As mentioned in my previous letter victims of the above conditions are all potential taxpayers.
5. Neither Medicare nor Centrelink provide services that are suitable, adequate or relevant to the needs of many of these people.
6. The ME/CFS Society (S.A.) Inc. is administered entirely by volunteers, most of whom are sufferers or family members of sufferers, and financed entirely by membership fees and donations. There is no energy for fundraising. Neither is there any contribution from government at any level. You will have noted that Senator Mason suggests sufferers refer to the Society for support and guidance.
At present the Society is having difficulty compiling a list of doctors who are competent in treating the condition, and who are willing to take on new patients. Perhaps you could encourage the Health Minister through Senator Mason to provide the Society with a financial contribution to assist with this project, and several others that we would like to carry out. I look forward to an early response to this request.
Enclosed you will find some information which I hope you will find of interest. May I also suggest that you refer to the Society’s website www.sacfs.asn.au for an indication of how well they do with so little.
It is unfortunate that many people who make significant decisions regarding the lives of people with these chronic illnesses have precious little knowledge of the complexities of the illnesses, or of the needs of those who suffer.
It is my intention to correspond with other politicians and potential politicians regarding these issues, therefore copies of our correspondence may be included in these communications.
Here are scans of the letter: