September 2001
Greetings. I have to start with a sad announcement – an era has ended. Judy Lovett has retired as our representative to the National ME/CFS Association – of which she was Chairperson. This ends a long run of tireless and productive involvement in both the National ME/CFS Association and our Society. Many thanks go to her for the years of hard work and service that she has rendered our cause.
The last three months have continued to be busy and tiring for the Management Committee! You may notice a new voice in our office if you ring. We have set aside some funds to pay for Norma to help us out. Whilst we have each been languishing to different extents we have needed someone fit and healthy in the office to keep our heads above water. It has also freed us up a bit to a bit of strategic planning and grant writing.
A brief summary of what has been happening…
The draft guidelines came upon us all of a suddenly at the end of June, necessitating a change of plans and priorities. (For those who don’t understand what we mean by ‘the guidelines’ please refer to the explanatory articles in the June 2001 Talking Point.)
It was very encouraging to have so many along to the July Meeting where we discussed, amongst other issues, the subject of the guidelines.
A response to the guidelines was written on behalf of the society (for those with Internet access see www.ahmf.org for a collection of responses made by people all over Australia).
We had hoped to break the back of setting up the new office, a number of issues have either delayed or encroached on our time. Some of those things have been planned, others not.
For example, we had a setback in the office – with combined smells from new carpet and paint playing a little havoc with some of us. We have done what we can to improve the situation but for the really sensitive only time will alleviate the problem.
Our most urgent long-term need is to find healthy, altruistic people who can do shifts in the office. We don’t expect sufferers to take this on (unless in recovery) because too many people in the past have burnt themselves out. We need healthy people who can be regularly committed to specific jobs, who are willing to get to know the organisation and its operations, who have good people skills, and who are semi-computer literate. OK, so these people are not that easy to find, but It’s an important first step to know what we are looking for.
For health and personal reasons we have had a few Management Committee members resign. Many thanks to Boris Dontscheff, Beulah Carter and to Margaret Whyatt who each contributed to our efforts this year. I also give thanks to Peter Cahalan and Sue Heard (both parents of sufferers) who have come on board to help. I would also like to give mention Karen Zweck and Penny Cahalan who have been helping in the office too.
The Management Committee has been doing the best job it can with the resources it has – we are constantly having to reassess our priorities, and adjust what we take on.
We were privileged to hold a public medical seminar on August 25th. This featured input from Dr Del Fante, Dr Rey Casse and Dr Richard Burnett. The materials presented were fantastic and everyone who turned up got their money’s worth.
The only disappointment was that it could not possibly have been a worse day weather-wise. It was miserable and no doubt kept a lot of people away. And, of course, this was disappointing from a financial point of view.
For those of you who didn’t attend this meeting, and the one back in May, maybe you could consider purchasing a video of either event. Our videos have been professionally cut and edited and cost $18.00 (GST included) + $3.50 delivery. We make a small profit on those so your purchase will assist us a bit, and you’ll have a good resource to lend to your doctor or show friends. (copies of the first and soon the second are available for loan from the Disability Information and Resource Centre).
I’m pleased to report that we had another successful GP seminar on September 22; it was attended by 30 Clinicians. The event was run in partnership with Fibromyalgia SA – with one half the seminar dedicated to Fibromyalgia, the other to ME/CFS.
It was great to forge bonds between our group and Fibromyalgia SA – hopefully we will be able to do a lot more together in the future. Their group has a lot to offer, and I certainly encourage those of you who suffer from Fibromyalgia to look them up. I recommend their 2-hour seminar: ‘The Laypersons Guide to Making Sense of Fibromyalgia’ (next one in March I think).
With a great rush the International ME/CFS conference is coming upon us. (This conference is for health practitioners only). Along with the Alison Hunter Foundation each of the State Societies are helping to make this event a success.
I am pleased to announce our Society has donated $4000 to the Conference; this has paid for all of the South Australian ME/CFS Medical Research groups to attend the conference.
The Conference is no small undertaking (over $50,000 budget.) Monies are tight has necessitated a letter-writing campaign to Politicians and Corporations to seek funding – and this has taken a lot of time and energy.
On the October 14 I took part in the AGM of the National ME/CFS Association as the South Australian representative.
Simon Molesworth QC, president of the Victorian ME/CFS Australia (SA) Inc., has agreed to be the National ME/CFS Association President. We are very lucky to have such a skilled and knowledgable person heading up our cause.
The main topics of discussion were, as you would imagine, the guidelines and the upcoming Conference.
Well it’s that AGM time of year. It would be great to see as many of you as possible along to the AGM. Not only will we review the year just gone, but we’ll be discussing plans for the next year – this is important because we are going to face one of our most interesting years.
Finally I would like to be firm about an issue. I ask for everyone to pull together and support one another and the management committee.
Please bear in mind that our Society is run by volunteers who are either sufferers of ME/CFS or carers of someone with ME/CFS. Understandably we have a turnover of people who help – people do their bit whilst they have a ‘window of wellness.’ Given these limitations we cannot possibly promise to you five-star service and professionalism.
It is emotionally draining and deflating at times when people expect our Society to be run like a Swiss watch. There are times when we run well, and times when the ride is a little bumpy. Just beware of ‘cutting off the hand that feeds you’ – it might not seem like a great hand, but I can assure you we are trying our best.
I would therefore ask for all your ‘positive energy’ and encouragement; we will need it to continue on.
God Bless
Paul Leverenz
President
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This article appeared in the September 2001 issue of Talking Point
Copyright ME/CFS Australia (SA) Inc
Reprinted from http://www.sacfs.asn.au/