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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 2001

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

1. Introduction
2. Where we started this year
3. Office
4. Finances
5. Membership
6. Professionalism
7. Human Resources
8. Constitution
9. Towards developing a broader/better understanding of our Society and ourselves
10. Managing the Society
11. Thankyous

1. Introduction

I want to start by saying I am very proud of all we have achieved this year despite the continual struggle we face for health and recognition.

As I’ll explain more fully later this Management Committee inherited a very difficult situation. I need to make it clear that the Society almost folded in the last 2 years – for lack of human resources. For the second year in a row we struggled to achieve a quorum at the AGM and had to hold meetings in February. When you have to start asking for nominations from the floor ‘on the day’ you are really struggling – not just numbers wise but, more importantly, in organisational continuity. I think it is important that we, the members, realise this before making assessments of the Management Committee.

There is much positive to report – we have made inroads into several areas, and achieved a lot this year.

Feb 18 – Public meeting with Dorothy Morris speaking.

Feb 24 – Management Committee elected.

May 11 – GP Seminar held at the Chiffley Hotel, with Hugh Dunstan as the speaker, 26 GPs attended.

May 12 – Public Seminar with Hugh Dunstan as the speaker “Advances in Metabolic Research” at Urrbrae Education Centre. Roughly 200 in attendance.

July 21 – Members Meeting: Judy Lovett spoke on the National ME/CFS Association / and the Management Committee presented a report on the Royal Australasian College of Practitioners working party Draft Guidelines.

July – Response to Royal Australasian College of Physicians sent.

Aug 25 – Public Medical Seminar at the University of South Australia. Speakers were Dr Peter Del Fante, Dr Rey Casse, and Dr Richard Burnett. 80 in attendance.

Sept 22 – GP Seminar. Co-organised with Fibromyalgia SA and the Adelaide Western Division of General Practice. 30 attended.

Advocacy for National Alison Hunter Memorial Foundation Conference. Letters to Federal and State politicians, and to businesses.

Advocacy for important issues such as chemical sensitivity

Improved liaison with other organisations – particularly Fibromyalgia SA and the Allergy and Chemical Sensitivity Association.

Development of an Education Support Group which has made some inroads into a number of issues dealing with secondary schooling.

In July, we moved to a reasonable sized office and are on the way to setting it up well. We are in the process of setting up systems and structures that will provide long term benefit to the organisation. Our realistic goal is to have it up and running well by Awareness Week 2002.

We have been working on a lot of things which will take fruition next year. A few of us have attended the Chronic Disease Self-Management Program at the Arthritis Foundation (http://www.arthritissa.org.au/). We plan to train leaders (we have already done one person) and trial the course for ourselves next year. (http://www.stanford.edu/group/perc/cdsmp.html)

It is also good to note that Bill Daniels has again been asked to run a WEA course on Chronic Fatigue Syndrome. Whilst this is not an ‘official’ Society event it is good publicity for the condition.

So we have had a productive year, and as I said can be proud of it.

Along the way we’ve had assistance from a few people. I’d like to extend thankyous: IITAB & SA Training Revelation who donated their old phone system to us; Electrolux for a discount on a refrigerator; and Bank SA for a $1000 donation.

2. Where we started this year

Key points relating to the state of the Society Feb 2001:

General State: Constant turnover of Management Committee members has drained our ‘knowledge base.’ In any organisation operations must be constantly reviewed and improved. Little of this has been able to be done over the last few years and a lot of our materials needed (and still need) review.

E.g. training programs for Support Line Worker, Support Group Leaders, Job descriptions for Management Committee members – not to mention key policies.

We inherited a Society which has just experienced declining membership. From 570 in 1999, we were down to 350 at the end of last year. (We hope to hold at 350 by July 2002.

Finances: Inherited a situation where income had to be rapidly increased – we were incurring large deficits.

3. Office

I acknowledge from the outset that office hours totalling 6 hours per week are not ideal – and are not consistent with any measure of professionalism. (I will point out that lately we have been open 10am-4pm on the Tuesday and Thursday, and that we have been very prompt in responding to phone messages.) I believe it has been necessary this year for us to take some short term loss for a long term gain. We have needed to be free to sets things up as we would like. In the new year we will slowly increase the office hours to more acceptable levels.

4. Finances

Finance is now looming as our biggest concern. With reduced membership and increased costs it was always imperative we increased income this year. Unfortunately we have not been able to achieve that. We simply have not had the human resources to tackle the issue. It is only now at the end of the year that we are at the point where we have together sufficient materials to tackle a lot of the grant applications that need to be made – especially to the Department of Human Services.

Our position demands a strong focus on grantwriting for the next 6 months. It also demands we look at the issue of fundraising. Up until now it has been the unwritten policy of Management Committees not to ask for donations for general revenue from members; they have also avoided labour-intensive fundraising activities such as fetes, quiz nights, chocolate / lamington selling. We know none of these are realistic for us to take on. I don’t have all the answers but we face some critical times ahead financially, and we may need to call for some help in order to buy a little extra breathing space.

I want assure you that we will attempt to do these things with the utmost sensitivity. They need to be done in a way where our many members who are financially and energy-challenged do not feel guilty, but provide opportunities for those who are willing and able to help out to do so.

5. Membership

I think we have arrested the membership downturn. We are badly in need of increasing membership, but I believe in a lot of ways membership is a barometer of how well you are doing. Increases in membership will occur as services improve and as we demonstrate management stability. (It would be nice to get some funding to advertise though.)

6. Professionalism

It has been very much impressed upon this Management Committee that we need to move toward a more professional operation. Without such we will not attract the level of expertise to the organisation which we need to succeed. We are operating in a marketplace where other charities are run professionally.

This starts with treating all volunteer positions (apart from the most very casual) no differently to paid ones. All key volunteers must go through an interview process before being accepted. It is important that we maintain a team, and choose suitable persons to fit into it. I can’t stress that enough. Not everyone who volunteers can be accepted.

To be professional we must develop a team that can work together, that has the necessary skills. Starting from late September we have tried to look for people who can come on the Management Committee who have specific expertise such as fundraising, legal or marketing knowledge. In the office we need to have people that can gel together nicely – we won’t retain volunteer workers if they don’t enjoy coming in and don’t feel like they are being productive.

7. Human Resources

Reflecting previous year’s experience we had a turnover of personnel – people were able to give what they could whilst their health allowed it. Throughout the year we had a total of 13 Management Committee members.

However a lot has been left to a few. This is not sustainable – we need people who can be involved for 5-10 years not just 1-2 years. It is important we develop a knowledge base.

Despite our good intentions over the years, history has shown we (people with CFS) struggle to have the stamina and energy to see jobs through. The Management Committee has made an important decision that we must pursue healthy to work in our office. Ideally we would have a paid person who would look after the banking and processing of memberships, and other key administrative jobs. This would ensure continuity and professionalism in the organisation. We must not expect people with chronic fatigue syndrome to take on the burden of administering the Society. We also see the value in volunteers who are healthy and can make a commitment. We have made good progress, and will continue to work with Volunteering SA.

Moving toward a more professional method of operation involves have a small team of people working in the office (too many cooks spoil the broth).

In September/October and the Management Committee made a decision of hiring a temp to assist us with processing memberships / banking / filing. We allocated $5000 for this task. We are actively in the process of seeking funding for that position to continue.

8. Constitution

As was pointed out last year, our constitution is in need of an overhaul. The 2001 Management Committee have determined that the Society should make it a priority to review and upgrade the constitution by the end of 2002.

9. Towards developing a broader/better understanding of our Society and ourselves

It is very important that we are kind to ourselves. If there is one thing that has been impressed upon me this year, it is that ME/CFS is an emotional illness. Many things compound that to mean we have an ‘emotional’ Society. It is important we recognise the following things:

  1. It’s not fair that we have this illness ME/CFS (but we have to deal with it)
  2. It’s not fair that circumstances conspire against us such that the government is slow to recognise ME/CFS (but we have to keep at them)
  3. It’s not fair that we have to not only try to help each other, but we have this added burden of convincing the Government and medical practitioners that we are genuine
  4. It’s not fair (and painfully ironic) that people with an energy draining condition (and debilitating) have to do everything for themselves without government funding (especially when the government does so much for people who voluntarily damage their own health through smoking, drug addiction, alcohol abuse etc…)
  5. It’s not fair that many of us are financially crippled by ME/CFS, and yet we are having to maintain our Society by our memberships and donations (bigger organisations can offer free membership)

Step one to maintain emotional health is to acknowledge these things. It is easy to fall into the trap of becoming conditioned to abuse, injustice and inequity. Let’s not unduly beat ourselves up – life is tough enough as it is.

Step two is to channel frustration / anger / pain into the right channels. This will vary from person to person but whatever the approach the goal must be to take control of our lives in ways appropriate to our situation. We understand that whilst many of our members cannot offer physical or financial support – everyone can offer moral support at the very least. One card or phone call a year from every member would give us some energy to go on.

Until ME/CFS receives official recognition, and the Society receives Government assistance, I put it to you that we are fighting for a cause as well as running an organisation. And an important one too. It is important that we hold on until the aforementioned relief comes.

10. Managing the Society

If you feel the Society is not able to do enough for you, and you get frustrated, please bear in mind that the Management Committee is every bit as frustrated as you. People join the Management Committee because they want to make a difference. It can be a very lonely job because we are so under-resourced it is difficult to make the progress we’d like. We know all the wonderful services that members could benefit from – but we just don’t have the people and the money. Until we do, we can only do our best.

We need the moral support of every member to give us the hope and energy we need to keep going.

11. Thankyous

Thanks must first go to Mr Boris Dontscheff who managed the Society over last Summer at great personal cost to him; thanks must also go to those who helped form a caretaker committee to keep the business of the Society going. Thankyou to Rebecca and Gordon Byles, Helen O’Day.

Thankyou to the excellent committee we have had this year. Thankyou to: Farrah Tate, Fiona Thompson, Beulah Carter and Margaret Whyatt for their contributions during the year; similar thanks to those Management Committee members who are not continuing on – Marian Hansen, Sue Heard and Luke Pullen; and last but not least, Stephany Retallick who gave a lot to us this year.

I’d also like to thank all Information and Support Line Workers, who continue to do a great job for the Society. So thanks to John and Vicki Foote, David Andrews, Alex Harris, Elaine Balfort and Rosie Rowland. Special thanks go to Rosie, who has retired from the Line after several years service.

It is also important to recognise the work of our Support Group Leaders. Thanks to Jane Gill, Julie McGinley, Marg Turner, Melanie Stratil, Darryl Turner, Bill Daniels and Fran McFaull.

We are improving our Society – slowly but surely. Providing we move towards greater professionalism and gain more credibility and respect, I am hopeful that we can secure some Government funding over the next 6 to 18 months. The illness is becoming more and more recognised, and more and more medical practitioners are showing an interest.

Paul Leverenz
24 November 2001

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