ME/CFS Australia (SA) Inc: Information Project

	Email the Society
	Donations

ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Mailing address:
GPO Box 383,
Adelaide,
South Australia 5001

Office:
266 Port Road,
Hindmarsh,
South Australia 5007
Ph: (08) 8346 3237
('834 MECFS')

Office Hours:
Wednesdays, 10am-3pm

Support Line:
(Mondays and Thursdays,
10am-3pm)
Ph: (08) 8346 3237

SA country callers:
Ph: 1300 128 339
(local call)

FIBROMYALGIA HELP:
Contact
Fibromyalgia SA
at the
Arthritis Foundation of SA
118 Richmond Road,
Marleston 5033
Ph: (08) 8379 5711

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.

Donate online

Information and Support 2004 is an online appeal that aims to improve our Information and Support Line.

ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies 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.

Information Project

Tell us what you know!

By Anne Tichborne, Information Project Coordinator

“Working together, building knowledge among patients and the community toward greater well-being for people with CFS.”
– Anne Tichborne

The Information Project is really the result of the 1998 member survey. Members’ responses made it clear that the thing they valued most about the Society was access to information, whether it be from Talking Point or direct enquiries made to our Information Line. At the same time, members were frustrated that people in the community, and doctors especially, were not well informed about their illness. When the Management Committee looked at the survey results, it could see that continuing the Information and Support Line was crucial, but it was such an arduous task for people working on the line that they had to be supported.

One way to make their job easier was to help find answers to questions received on the Line. Remember some of these queries are from professionals, or uni students, who are looking for pretty sophisticated stuff. So are some of the members! The Society had a lot of information, but no-one really knew what we had, or exactly where to find it. It was also obvious that the members themselves had a great deal of knowledge and experience and there was no way we could access that. First we thought of having an information officer, but what would that person do exactly? I took on the job of writing a job specification, and the Information Project was born.

This is how it works: every bit of useful information that comes into the Society will be recorded on a database. This will include contact details of organisations and individuals who offer services which people with CFS might need. Of course we already have the list of doctors sympathetic to our needs, and that will be incorporated into the database. We’ll list articles, brochures, scientific papers and so on – anything that has information about our illness or how to live with it. The database will show where the information can be found and we’ll also list reference persons, that is members who’ve indicated they can be called on to give information about a particular topic. There are lots of people out there who’ve studied up on something that interests them, and I’ll be approaching them to ask if they’ll join our reference person team.

The database has a couple of hundred items on it so far, but the potential is thousands. As soon as there are 500 I’ll print out our first Information Index. This will be a quick reference guide showing where to find up to date info on our most commonly requested topics. Each worker on the Information Line will have one, as will each Support Group. It will be regularly updated.

The Project Team comprises seven at the moment – Tracey Ash, Peter Scott, Graham Hughes, Borts Dontscheff, Darryl Turner, Jo Tonkin and myself. I’m really thrilled that these people are so keen to contribute. All have CFS and three are housebound! I either send tasks to people by e-mail or deliver a project package. Much of the work involves searching the Internet or reading magazines and journals looking for material. What we need now are people to enter data on the database. It’s not hard; anyone with a bit of computer experience can do it – it’s really just filling out a form.

The Info Project won’t just supply information to members and the community, it will raise the profile of the Society and of people with CFS by showing we have a sophisticated understanding of our illness and are actively seeking wellness. It will give members the satisfaction of knowing they are doing something useful, and by creating an efficient work practice will make the job of working for the Society easier for everyone.

All aspects of the project are being documented, and at the first opportunity we will make an application for funding of the kind which the government already provides to consumer self-help projects of this type.

So, if you’re wondering what to do with those dull periods of your life, we’re here waiting for you, even if you are housebound. We tailor work to suit different energy levels and time availability, and we provide training to all our volunteers through our Volunteer Project.