Relevance of the NSW ME/CFS Society to Members and the Broader Community
Services we provide to members (random order):
Advocacy
Advocacy in fields such as:
Example: recently a distressed carer called about her daughter who is not a member, who suffers continuing harassment from a neighbour. Many avenues of help were tried including contacting the Local Chamber Magistrate, The law Association, Legal aid and Community Legal Centres. The problem was then taken to the management committee who decided to publish the problem on the website to ask others for help. Many hours were spent trying to help solve this problem and we continue to work on a solution or try to alleviate the situation to make this person’s life more tolerable.
Library
Well stocked up-to-date library of books, tapes and CDs eg
The CFIDS & Fibromyalgia Self Help Book by Bruce Campbell
Chronic Fatigue Syndrome…a natural way to treat M.E. by Professor Basant K Puri
I Remember Me (DVD) A Film by Kim A Snyder
The Society’s list of library items can be found on the website. There is a $40 security deposit per item (credit card debit authorisation/ cheque) which is returned when the item is returned. Items can be borrowed for up to 35 days. Cost of postage to the borrower is incurred by the Society but return postage is not. For a full explanation of borrowing guidelines please contact the Society.
Solidarity
Important to have the numbers to represent the prevalence of PWME/CFS in NSW. Numbers (voters) give us more voice in such matters as lobbying and funding.
Services available to the general CFS community eg callers who phone the Society needing advice or information, are supported by all our members.
Companionship
Many PWME/CFS are isolated and lonely. Membership offers them companionship with people who understand their condition. EG Events held where people can get together such as seminars and awareness week gatherings and access to local support groups.
Support Groups
Through the vehicle of our support groups we can drive and deliver a bond of strength which brings to life a future of options, choices, solutions and positivity.
Support groups provide a relaxed setting where people can :
Social Worker
Provides a number of services to callers who are both members and non members including verbal advice and information with regard to:
Journal
We distribute and contribute to a quality journal that has stories by people who have been on the CFS journey, Society information on events and services available for members and a comprehensive medical section written by a doctor. We also distribute two newsletters to members annually.
Volunteering Opportunities
A valuable resource for members who are able to do some work but are too disabled to be employed to use their talents and learn new skills helping others. Volunteers also from the general community can learn about the complexities of living with this illness. Students are able to get up hours in field work related to their studies.
Website
Both informative and interactive it contains information, stories about living with CFS by members and links, blogs, chat rooms and more eg members can log in to check updated Society information on changes and events.
Seminars
We organise educational seminars for our members eg the 2007 seminar with Dr Schloeffel which was free to members and their carers which approx 100 people attended and Dr Schloeffel’s extensive notes were handed out and lunch provided.
Education
We educate the medical fraternity on the illness where possible eg the Paul Newman’s Foundation Grant. $26k was spent distributing information kits to all doctors throughout NSW.
Patrons
Patrons supporting the Society include Patron-In-Chief Her Excellency Professor Marie Bashir, Governor of NSW, Professor Lesley Wilkes, Research Professor of Nursing at University of Western Sydney and Leigh Hatcher, Sky News presenter and author.
Awareness Raising
A primary aim of the Society is raising awareness of the illness in the community eg stalls in local centres, Awareness Week activities, through the media, distribution of brochures and posters in community areas .
Research Funding
In the past the Society has been active in raising funds which have been donated to ME/CFS research within Australia
Fundraising
Opportunities abound for members to be involved in fundraising at any level and information is provided by the Society to help fundraising events.
Doctor’s Database
Collected from members a list of doctors sympathetic to PWCs