Most of our volunteers have ME/CFS, including severely,
and some of us care for a person with the illness.
I always admire what you all are doing and how much you have achieved with publicity, research and the incredible commitment despite even having so many health issues to struggle with. Bravo to all of you!Karin
Our management committee ensures that ME/CFS SA is managed according to our Constitution, best practice and the law. This includes upholding our mission, aims and goals when planning and making decisions.
The needs of those with ME/CFS are complex and considerable. We work towards improving the quality of life for the ME/CFS community by providing services and undertaking projects.
Responsibility for services and project work are delegated to our teams of volunteers who report back to the Management Committee.
Talking Point magazine
The publication of Talking Point involves many tasks: writing articles, sourcing materials, editing, proofreading, publishing, distributing in both hardcopy and online formats. Talking Point has been in publication for more than 30 years, with local, interstate and international readership. This is our largest team of volunteers.
Maintaining a website is complex. Roles include technical work behind the scenes, writing and sourcing of content, and daily input of emerging information.
People in the ME/CFS community often have different, specific needs in the ways they communicate. Our team provides services by telephone; email; bulletins in both hard and soft copy; DVDs and online recordings; and books for loan.
We plan, deliver and follow up on seminars four times a year, organising a range of presenters including local, national and international researchers and clinicians. We also provide a friendly opportunity for people to catch up over afternoon tea, in an environment that accommodates the special needs of our community.
For those who cannot attend, we record seminars and make them available via a digital link in Member Resources or on DVD for those who do not have access to the internet.
Social and peer support
Our volunteers host face-to-face, online and telephone opportunities for people with ME/CFS and their carers to socialise and learn from each other.
Memberships and finance
Maintaining records for memberships and finances requires constant attention to accuracy, privacy and completeness. These roles underpin all the work of our organisation.
Awareness and advocacy
Our awareness team runs events, creates public displays and seeks opportunities to work through conventional and social media, including Facebook, Twitter and Instagram. We engage with the public, health practitioners, politicians, educators and other people of influence.
Advocacy activities include writing submissions, engaging with policy makers, and representation on government and not-for-profit working groups.
We collaborate at local, state, national and international level to bring about much-needed change.
I am struggling to think of a cohort of people in our community that large for whom there is so little.
Senator Scott Ludlam, Senate Estimates, 21 Oct 2015
We contribute to medical research through consultation, co-design and recruiting participants.
Teams arise and disperse as specific projects are undertaken. Some of these involve collaboration with not-for-profit or commercial organisations with no prior connection to the ME/CFS community.
Last edited: 15 December, 2021