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Quality of Life?Quality of Life?

ME International

State Body

Myalgic Encephalomyelitis Research Group for Education and SupportMyalgic Encephalomyelitis Research Group for Education and Support

ME in America

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ME/CHRONIC FATIGUE SYNDROME/FIBROMYALGIA ASSOCIATION OF QUEENSLAND. FAR NORTH QUEENSLAND SUPPORT GROUP. ACTIVITY STATEMENT, October/November 2003. 1. The new round of meetings are progressing. It is very rewarding that gradually we are meeting people who have only been voices on the phone. Meetings have been at Mossman, Ravenshoe, Westcourt, Smithfield, and a Christmas meeting in Atherton. Future meetings in the New Year will include Edmonton and perhaps Port Douglas, and a new venue in Ravenshoe. 2. A new CFS/FMS/MCS Website is being established by Peter Cummins in Smithfield. It is still under development, but the first 3 pages are looking good. The aim is to provide a current newsletter, meeting schedule, and links to other websites and resources. 3. New discovery of the "Yellow Ribbon Card". This card is similar to the one used in W.A. by mental health patients. The card has a yellow ribbon on one side, indicating that the bearer needs help, and on the reverse are details of action required, people to contact, and room for you to put an emergency contact phone number. This should be a bonus to people who are out of their own environment and have a relapse, and are temporarily not capable of helping themselves. 4. There are some simple brochures available from the Chemist about CFS. 5. Many complaints have been made against the doctors contracted to Centrelink as C.M.O's. 6. The Centrelink Disabilities District Manager, Jeanette Hamill, is a very approachable person, and has advised that we should gather evidence, in writing, against any contracted doctor who appears to be doing the wrong thing to Centrelink claimants. Disabled people should not be subject to ridicule or abuse. Doctors should examine all the relevant material supplied by a claimant. 7. We provided advocacy for a CFS sufferer, who is having long-term difficulty at Centrelink. The Disability team at Atherton are getting used to having an advocate accompanying PWC's. 8. The Amalgam Action group are getting serious about use of amalgam for fillings, and about the human body being contaminated by these deadly chemicals. 9. Letters have been written to West Australian Dental Health about amalgam. They try to assure us that when it is stable as a filling, "research shows no leaching" into the body! Except if someone is allergic to it! 10. Letter has been written to the Premier, about the long delays getting dental treatment in Atherton, and the health profesion's attitude that the oral cavity is not part of the body. Wait and see their response. 11. The Cairns Nurse Trainer invited us to give a lecture at their regular "Nurse Training Day", about CFS/FMS/MCS. A very good attendance, showing keen interest especially in clinical practice. 12. The Qld CFS Association has Public Liability Insurance. Meetings are covered. When we book a venue, we are asked to produce a copy of the Policy Cover Note. 13. New Arrivals- Gradually, we are gathering expertise. (a) Jacinta Commins, former employee of the Victorian CFS Society, now lives in Port Douglas. She attended a meeting at Mossman, and will be an asset to the support group while she is here. (b) Gwen Hemmerton, from the Bass Fibromyalgia Support Group, is migrating (returning?) to FNQ, and is planning to live in Innisfail or Gordonvale. We have had preliminary discussions about co-operating with information and at meetings. (c) Jodie Lindsay, a former resident of Cairns (and the former CFS group?) is returning to Cairns to live, perhaps early in the New Year 2004. 14. The Tablelands Community Council meets every 3 months. At each meeting there is a "round the ridges", with all the community service providers giving brief outlines of their activities and highlites, and latest news or developments. An ideal opportunity to get publicity for CFS and health consumerism. 15. We have obtained the services of a Naturopath as a speaker for the December CFS meeting in Atherton. 16. We have had a meeting with the CEO of the FNQ Rural Division of General Practice. A very informative meeting, gave copies of the CFS Information Sheet and Brochure. Also gave a copy of the Byron Hyde CFS Clinical Manual, to be held as a resource for all the G.P's in FNQ. They also agreed to distribute Doctor's Kits when they become available. 17. The Victorian CFS Society have obliged us with copies of their CFS Information Pack, and also a KIT for Medical Practitioners. This is a comprehensive document of about 45 double sided pages, and seems very comprehensive. 18. The local Member of Parliament has agred to photo-copy 70 copies of the Medical Kit for distribution. 19. The Tablelands Health Service District has established a new CONSUMER REFERENCE GROUP. We are privileged to be one of the first groups asked to be part of this forum. The opening ceremony will be in Herberton on Friday the 5th December. 20. The Consumer Reference Group will be the forum for the community and consumers to lodge complaints, make suggestions, and get improvements in health care on the Tabelands. The issues raised at the Hospital Public Meeting recently are still the issues being complained about, so these are being re-presented at the opening meeting in writing. 21. Extra issues that we can raise are (a) Environmental Illneses (b) Access to decent health care, and adequate treatment. (c) Long delays in dental care. (d) Will the trained doctors be ready for the illnesses resulting from genetically modified food? 22. Please let us know if you have any further issues you want presented. We wish you a merry Christmas and a happy and healthy New Year. Neil Reynolds.

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