About the ME/CFS Society of NSW
The Society was founded and registered as a Charity and Public Benevolent Institution in 1981, so donations to the Society, which is located in Sydney, New South Wales, Australia, are tax deductible. Since 1981, the Society has given seed-funding to establish new support groups for people affected by ME/CFS in several Australian States and Territories, paid for experts to attend overseas conferences, obtained government grants for itself and other ME/CFS societies, and kept its members informed about ME/CFS through a quarterly journal, other publications and its library of books. The Society is a founding member of and supports research programs recommended by the national peak body, the "ME/CFS Association of Australia Limited".
Fund Raising for Research
The Society has raised substantial funds to investigate the causes and treatment of ME/CFS. In 1987, at a time when the Australian government did not support ME/CFS research, the Society approved a two-year grant of $30,000 for Australia's first ME/CFS research project. The lead researcher went on to manage ME/CFS research projects at Sydney's Prince Henry and Prince of Wales Hospital and the National Institute of Health in the United States of America, and was appointed medical adviser to the International Federation of ME Associations.
International ME/CFS Awareness Day (and Fibromyalgia Awareness Day) is recognised on May 12 each year to commemorate the birth in 1820 of Florence Nightingale who inspired the founding of the International Red Cross. Nightingale is believed to have contracted ME/ CFS in her thirties. She spent the last fifty years of her life virtually bedridden. Events to publicise ME/CFS occur internationally throughout the year, but are more frequent during a week of awareness and fund raising activities that straddles May 12. The NSW Society has hosted annual launches of Awareness Week at State Parliament House. Such venues enable the Patrons together with Society members and guest speakers, to explain this illness from the perspective of a health professional, a person with ME/CFS or a carer of someone with ME/CFS. The Butterfly is the symbols of Awareness Week and the Society. A butterfly symbolises the new person emerging as they break free from life restricted by ME/CFS. Light blue ribbons are worn on May 12th to show support for those affected by ME/CFS, and purple ribbons for those affected by Fibromyalgia.
The Society employs a Social Welfare Officer (SWO) for three days per week, a part-time event co-ordinator for one, and an accountant for two. The SWO provides a range of services free of charge to the general public by phone including:
- referral to appropriate providers within Commonwealth, State, or private health and welfare sectors
- education and media liaison with government and non-government agencies and other organisations for increased awareness of ME/CFS, improved access to services, and a more appropriate response to individual sufferer needs
- complex telephone support - most important to extreme, long-term or new sufferers with personal or family issues, especially those residing in rural or remote areas
- secondary consultation for health care professionals and counsellors working with carers and sufferers.
Health Practitioner Database
The most frequent questions to the Society are "Can you recommend a local doctor?" and "Can you send me information about ME/CFS?" The Society does not recommend medical or non-medical practitioners. It does, however, maintain a database of health professionals commended by its members. We continue to raise awareness and educate GPs within NSW on the subject of ME/CFS, however demand for understanding doctors is still high. If you are a member of the Society, and haven't recommended your (helpful) doctor, please consider doing so. We desperately need to know of as many health professionals (particularly General Practitioners) who are familiar and sympathetic with ME/CFS.
Please see the Support Groups page for more information.
Society members receive the quarterly journal. This professionally produced 32 to 36 page journal contains three sections of information: medical and scientific updates on ME/CFS; information relating to living with ME/CFS, including reviews of management strategies and books recently published; and a section of news about the NSW and Australian Capital Territory (ACT) Societies and their support groups. To maximise public awareness about ME/CFS, members and readers are asked to pass their journal on to a local library or health professional waiting-room. One journal each year focuses upon Society annual and financial reporting, and the election of management committee members.
The Society also has a volunteer workforce. These members, who are often ME/CFS or FM sufferers themselves, work tirelessly to keep The Society functioning for the members and general community. Although no members of the Society may recommend specific details of unique treatments, volunteers can provide information about generalised management techniques which have proved beneficial to others with ME/CFS. The Society constantly seeks competent volunteers and maintains separate volunteer databases for:
- Clerical and administrative help - members need to attend the office at Chatswood
- Awareness Week - fundraising and events organisation
- Community stalls and charity markets - manning a stall and talking to people about ME/CFS and FM
- Media watch - magazine cuttings, television or radio coverage, podcasts and RSS newsfeeds.
- Media interview - speaking to press, radio talk-back shows, local paper articles
- Phone-pal - support other(s) locally or long-distance. Much demand in rural NSW is unsatisfied due to inadequate volunteers (42% of Society members live outside Sydney)
- Specialist skills - journal editing, computer or internet website developer, fund raising, corporate sponsorship, media or political campaigns, legal advice, management committee.
Society Library Please see the Library page.