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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.
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SA Have Your Say Community Forum – a member’s feedback
May 10, 2006
Val McKeown attended an SA Have Your Say Community Forum presented by South Australia’s Strategic Plan in Adelaide on May 8, 2006. Val attended as a proxy for the president.
Her report shows that attendance at such gatherings can leave you wondering if it was worth the effort. But read closely and you’ll learn a few hints about how a seasoned campaigner does her best to get her message across.
Read on…
I felt that the “quality of life” forum was rather inappropriate in many ways. We were all allocated to specific working groups of about 6-8 people with a recorder and a governmental worker observing. We had no opportunity of selecting where we were to go according to our interests and as I fortunately discovered after the morning event the president had been allocated to something to do with ‘housing’. Not being able to find my name on the list I was told to sit were I wanted and so chose ‘health’. I managed to raise the issues of both ME/CFS people and Multiple Chemical Sensitivity a number of times although they were ultimately working from the bigger picture. I know that my comments were included (albeit in a more general way) as I made it a point to sit next to the scribe, lean over her shoulder when summarising, and gently add a word here or there.
In the session on ‘Psychological Distress’ we were not allocated tables relating to specific issues. Every table worked on the one subject. We had a set of questions for discussion which were similar to those from the morning session.
They were:
- Is this the right target?
- Is this the right focus?
- Are these the right strategies?
- Are these strategies being implemented effectively?
- Are there alternative focus/strategies you would suggest?
- Are there alternative methods of implementing these strategies you would suggest?
- Are there adequate partnerships for achieving the targets?
- What needs to happen for community ownership to occur?
The main question we all had was from whence and with whom had the research been done. This was an area wherein I again was able to bring up ME/CFS and Multiple Chemical Sensitivity issues. I explained that psychological distress also comes from isolation, stigma, disbelief that these are genuine illnesses, being unable often to work, etc, etc.
Our group believed that there could be a much wider focus on psychological distress issues and questioned much of what we had been presented with statistically. At the same time there were some very good and yet simple suggestions on strategies.
For the benefit of those who could not make it to today's meeting there is still a chance to make comments. Please go to the Creating Opportunity website for further detail. There is a need to be quick, however, as the report from today's forum will come out in June.
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