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ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001
Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')
Office Hours:
Wednesdays, 10am-3pm
Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237
SA country callers:
Ph: 1300 128 339
(local call)
FIBROMYALGIA HELP: Contact Fibromyalgia SA at the Arthritis Foundation of SA 118 Richmond Road, Marleston 5033 Ph: (08) 8379 5711 |
ME/CFS Australia (SA) 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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Disclaimer
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies 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.
Talking Point
March 2000
In this issue:
Pat
carries the torch
Health management
World CFS Congress
‘Cures’
Health management research and evaluations
By Cathie Powell
ME/CFS Australia (SA) Inc is the consumer reference group in South Australia for people with CFS, and we have links with the national body, the Chronic Fatigue Association of Australia (Judy Lovett is our representative), and with interstate and overseas groups.
For Australian health consumer groups like ours it is increasingly important that we work in partnership and collaboration with other agencies (HACC, health services) providing services to people with CFS and agencies evaluating and researching health outcomes. Government departments (both federal and state) consult with health consumer groups when making decisions about health service, research priorities, and funding priorities. Working together can make a difference.
Much of the funding is currently focusing on better health management and health outcomes for consumers. For CFS this is a dilemma and a problem for medical, allied health and community service providers, policy makers and funders as well as sufferers and carers. There is limited research available to inform Australian decision makers on the consumer perspective of CFS, the public health aspects and the evaluation of clinical practice methodologies.
The 1998 membership survey identified that medical care and health support services were affecting people’s quality of life. Respondents identified problems with access to medical and allied health care (physiotherapy, occupational therapy, dental, counselling and social work), complementary medicine, and home and community care services. Last year, when I began following up on the survey by visiting the health services and university training departments, I found that many providers were also concerned and asking about assessments, clinical practice, and the latest research on different approaches to health management. This was confirmed by the many requests to the Society from health professionals for up-to-date information that might help them in their practice, and by the need for information to advocate and appeal decisions related to therapeutic goods.
Our Society has students wanting to participate in our health management activities as part of their field education and clinical practice experience. We are also receiving requests from health providers as well as consumers about the evaluation of appropriate assessments, treatments, and exercise and diet programs being used. These are great opportunities, and I have been talking to university departments and professionals about working with them to develop projects that met the required standards and outcomes to be incorporated into clinical guidelines for the better health management of people with CFS.
In October 1999 I prepared a submission on behalf of the Society for the Consumer Health Forum and the Strategic Research and Development Committee of the National Health and Medical Research Council. Interstate Societies and individuals also made submissions.
In February 2000 the Consumer Health Forum released a report entitled “Consumer consulted research priorities” (The Australian Health Consumer, 1/2000). It identified CFS as a special case.
Click here to read the relevant extract from “Consumer consulted research priorities.”
It is an exciting time for us, and we don’t want to miss out on any opportunity. There is a list of proposed health management research projects that need consumer consultants. We will also need consumers for focus groups to discuss particular issues, and information from research and evaluations. You may have already provided your name to be a consumer reference for the information project. If you are interested in becoming a reference person or part of a special interest group on a treatment or health management issue related to CFS please let Cathie know.
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