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ME/CFS Australia Ltd
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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Suite 506,
North Terrace House,
19 North Terrace,
Hackney, SA, 5069


Phone:
1300 128 339

Office Hours:
Wednesdays, 11am-3pm

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.

Disclaimer

ME/CFS Australia (SA) 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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Annual Report 2002

By Paul Leverenz, President ME/CFS Australia (SA) Inc

1. Introduction
2. Management Committee
3. Achievements this year
4. Grants
5. Lowlights
6. Finances
7. Office
8. Thank you’s
9. Concerns
10. Closing remarks

1. Introduction

The struggle for recognition of ME/CFS continues. Progress is at times frustratingly slow. But given the resources we have, we can be proud once again with what we have achieved this year.

It can also be frustrating for the Management Committee because we would like to be putting more effort into advocacy, services and developing information resources, but we once we have taken care of the administration, running meetings, fundraising and Talking Point that there is little left over.

2. Management Committee

Glen Domeika, Adrian Hill, Penny Cahalan, and Peter Worseley were co-opted to the Management Committee during the course of this year. Rebecca Cordingley has also helped us as minutes secretary. Four of those people are continuing on.

3. Achievements this year

We have achieved many important things this year:

Responses before and after the release of Royal Australasian College of Practitioners Guidelines on CFS which had some positive effect on their content, and provided a good context for us to put our point of view across.

May 12 – Public Awareness Meeting with 400 in attendance. Excellent support and collaboration with Fibromyalgia SA.

Development of Doctors’ Notes (Version 1).

May 31 – Badge Day. Raised over $3000.

September 26 – President speaking on chemical sensitivities at Public Health Association of Australia meeting.

October 20 – Members Meeting. 45 attended.

First meeting of the ME/CFS (and related conditions) Clinical and Research Network. This is a forum (facilitated by the Society) for ME/CFS researchers/clinicians to get together and exchange ideas. The meeting in October was very successful.

Interaction with Department of Human Services – although we haven’t made the progress we would have liked by now, the DHS certainly know we exist.

Development of Office Procedure Manual.

Development (in progress) of Training materials for new office workers.

Revision of Support Line Workers Manual.

Information Pack for new members.

Projects that are underway but not yet completed:

Education Support Group – development of notes for Schools / Teachers / Parents of children with ME/CFS.

Self Management Course – delayed till April / May 2003.

Re-working of constitution – yet to be completed.

4. Grants

We have been successful in obtaining several grants in the last 12 months:

1. 

Sunshine Foundation: $2800 – Self Management Course

2. 

Community Benefit: $3080 for SAYME – Self Management Course

3. 

Foundation for Young Australians grant. $5000 – for SAYME Web site development/upgrade

4. 

Morialta Trust: $3300 – Information Kits, youth orientated, for parents, schools and doctors.

5. Lowlights

the passing of Tracey Ash; a lovely, young, energy-filled person cut-down by this terrible illness; and

the closure of the Allergy and Chemical Sensitivity Association of South Australia.

6. Finances

We life on a knife edge when it comes to finances. Membership accounts for only one quarter to one third of our income. The balance must be found by donations and fundraising.

The committee has discussed how we can reduce expenditure and increase income.

There are limited ways of reducing expenditure. One is obtaining cheaper rent. We have asked the government if they have any space they could rent us cheaply but they claim to not even have enough space for themselves. Another way is to reduce the cost of Talking Point by reducing its size. We can save postage and printing costs by making Talking Point available for download from our Web site. Such a download would have to be in a password-protected area, so only members could access it. This requires upgrades to our Web site which we are considering. We are also investigating alternative phone companies, to see if we can reduce our phone bill.

To increase income we believe Badge Days are a simple way of collecting funds. We have researched their effectiveness and consulted people experienced in running them. All we need is a team of 6-8 people who could do 2-4 days a year of collecting and we could easily raise an extra $3000 that way. And if we could get 40 collectors on our main CBD Badge Day instead of 20 we could easily get in an extra $3000. Thanks especially to Adrian Hill who has been instrumental in organising our Badge Days.

I want to give special mention to Geoff Wilson and Margaret Wing, who between them, have kept our books on track over the last 12 months – being on top of our finances means we can budget and plan ahead much more easily.

7. Office

Since last year we have built up to being open three days a week – with two people rostered on each day. This has worked brilliantly. Even during the busy time of membership renewals this was adequate.

This has been possible with the assistance of five fantastic people: Patricia Smith; Diana Fleet; Christine Hickmann; Trisha Moores; and Ling. These people are putting in a total of 30 hours a week between them.

Without this help the President can honestly say he wouldn’t have lasted the year out. The now fully functioning office has taken a substantial load of his shoulders.

8. Thank you’s

To all the people who make this organization tick. There are many people including the support group leaders, support line workers and the Management Committee.

Special thanks to Bill Daniels for coordinating the support groups despite quite poor health – he continues to be a faithful servant of this organisation – and to Peter Scott who has been fantastic with the Web site.

Final thanks go to Jon and Vicki Foote for their work coordinating the Information and Support Line.

9. Concerns

Whilst we have a full Management Committee, we have not been able to develop sub-committees or expand our team much beyond the committee.

Lack of volunteers for the Information and Support Line.

Poor attendance at Support Groups.

Income.

Talking Point helpers.

10. Closing remarks

Please continue to support the Society – not just for yourself, but for everyone who has this condition.

It is important, for all those people who are suffering with this condition, that we persist in our mission, and that we push on as an organization. We will continue to do what we can, and especially continue to lobby the government.

Paul Leverenz
9 November 2002

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