June 2001
Hi,
Due to illness in the family of our President, and his own poor health, I have continued to act as President since the last Talking Point.
A lot has happened during the last 3 months – the pace has been frenetic!
Our GP seminar was great with 32 attending – best of all was that 50 or so GPs who couldn’t make it faxed us wanting to know what was presented at the meeting!
We are now working hard to ensure we follow up these GPs and develop better links.
The public seminar featuring Hugh Dunstan from the Newcastle University Collaborative Pain Research Unit was a success with 200 or so in attendance; a number of new people came along and signed up. Special thanks go to Hilary McKay who put an ad in the Hills Courier Mail and was successful in getting a few new people along.
Since that meeting memberships have been coming in regularly.
The big news is that our society has gone up in the world – by one floor to be exact! We are now located in Room 510 (5th Floor) of the Epworth Building, 33 Pirie St, Adelaide (http://www.epworth.com.au/).
The room is just a little bit bigger and has an excellent storage area which should enable us to keep the place presentable. With new carpet and a fresh paint-job, I think you will be impressed with how it looks.
We will be having an open day on Wednesday, August 1 for members to come in and have a look. You’re welcome to come have a look at anytime of course during the office hours.
With the current hands on deck, the office hours will remain at 11am to 2pm Tuesdays and Thursdays. This doesn’t mean that it’s the only time we are in the office – the answering machine and email is checked often. (Thus far we have been able to achieve a quick turn around for almost all phone calls and emails.) As our team expands we will seek to increase our number of official office hours. Special thanks to Karen Zweck who has been a big help around the office.
The Society now has an Education Support Program which is being co-ordinated by our Secretary, Stephany Retallick. She has been dialoguing with SSABSA and has made some breakthroughs concerning the rights of persons with ME/CFS undertaking secondary education. A group of SAYME parents will now work toward improving the consideration these people receive, and will document information for other parents of secondary students.
If you come by anyone doing Secondary Education who is having difficulty dealing with their school, or just struggling in their situation then please get them to ring the office to speak with someone from the School Support Program.
The Management Committee has commenced strategic planning; our preliminary discussions have helped us to map out the sorts of services that we need to develop. A full report on that will follow later in the year.
In order to gain a rough idea of the services our member’s would like, we surveyed attendees of the May 12 Seminar. We understand that this was not a representative sample of you all, but it was clear that many people would appreciate self-management courses. Several things have reiterated the importance of developing such courses since that day. We are convinced it is a priority consideration.
Members should have received their membership renewal form by the time this edition is published. You will see that we have reduced some of the fees, and have introduced a split system where new members pay a little more than renewing members – to try to encourage renewal on time.
We have included a new membership category – the Family Concession rate for families where the breadwinners are concession holders.
We have a couple of interesting meetings coming up:
Saturday, July 21 – 12:15 for 12:30 at DIRC, 195 Gilles Street. Speaker: Judy Lovett. Bring a plate of food to share.
The Management Committee believe it is really important to continue to build a strong community within the society. To that end we want to a relaxed get-together, incorporating a meal. Over a shared lunch we can all get to know each other a little better.
Following lunch I have asked Judy Lovett to speak to us briefly about the National ME/CFS Association of Australia. I think it’s important we are kept informed with what they are doing, and its important we take an active interest.
There will be time to ask Judy questions, and the Management Committee. (STOP PRESS: This meeting will also be a good chance to explain the significance of the National Guidelines for CFS and the implications for persons with ME/CFS.)
August 11 – 1:10 for 1:30pm at the University of South Australia, Frome Road.
You may have heard about (or even taken part in) some new research being conducted in Adelaide – a partnership between the RAH and the QEH. These researchers are doing SPECT scans to study brain blood flow.
It must be stressed that this work is in its infant stages. Initial results are very promising with quite conclusive results for FM and ME/CFS sufferers. It seems there may be a distinct part of our brains, which isn’t receiving the blood flow it should – and FM and ME/CFS patients can be differentiated between each other.
Dr Rey Casse (RAH) will give us an overview of their research.
Dr Burnett is also working with Professor Scroop at Adelaide Uni gut function,
blood volume and bond density (once again, some of you may have been participants
in it). Dr Burnett will briefly update us on that too.
Please mark this one in your diary.
The Management Committee has undergone several changes since the last Talking Point. Farrah Tate has resigned due to her study commitments; she will be concentrating on Talking Point which in itself is enough work!
Peter Evans and Luke Pullen have joined the Management Committee and have been able already to make valuable contributions.
In our seemingly never-ending quest for a permanent Treasurer we have finally found one in Margaret Wing. We are so glad she has offered her services; thanks go to Marion Hansen who did a great job as an interim Treasurer until we found someone who could take the job on fully. Marion continues on the Management Committee.
We have been very lucky to receive assistance from SACOSS, who have provided funding for an auditor. Since this Committee was inducted, we have had to do a catch-up job Treasury-wise. Thanks go Fiona Thompson, Marion Hansen and Stephany Retallick who have got them under control.
It is a priority, once an audit is completed to the end of the financial year, that the Management Committee set out budgets for the next 12 months. This will ensure any new management committee coming into office will know where they stand from the beginning of their term.
The Management Committee is pleased to announce that Lyn Rossiter has been made a Life-member of the Society for her many years of service as Talking Point Editor.
We have many jobs ahead of us before we finish out our term as a management committee. Over the next few months we will be:
|
1) |
updating our Information/Brochure Packs. We have already started work on this but it has been delayed and taking longer than first anticipated; |
|
2) |
updating our Doctors’ list – in fact we are going to overhaul our list and set up criteria for GPs to be on our referral’s list, and to work toward increasing the number of GPs on it. We also hope to list the treatments different clinicians use, so members interested in a particular type can be referred to a clinician using that treatment; |
|
3) |
embarking on a promotion campaign to encourage as many GPs as possible to take out a Talking Point subscription and work more closely with us; |
|
4) |
developing OHS, Conflict Resolution and Harassment Policies; |
|
5) |
increasing support for Support Group Leaders; and |
|
6) |
applying for funding. |
The latter is so crucial if we wish to expand our services. Unfortunately, as with many other things, I had hoped to be further advanced in grant writing. The good news is we have done the bulk of the hard work to gather all the information we need to write good, solid grant applications. We just need to bring that stuff together and we are on our way.
Just as this issue was about to go to print we have just received the Revised Draft of the Chronic Fatigue Syndrome Guidelines. A quick review of it shows there is little substantive change to their psychiatric/psychological emphasis. This is disturbing.
In conclusion, I hope we can all work together to build a strong society; no individual can make that happen – a team effort is required.
I wish you all the best with your illness-management and hope that, despite obstacles, you can be an ‘over-comer’ and continue to discover new things in life worth living for.
*******************************
This article appeared in the June 2001 issue of Talking Point
Copyright ME/CFS Australia (SA) Inc
Reprinted from http://www.sacfs.asn.au/