ME/CFS Society of NSW

Services we provide to members

Advocacy

Advocacy in fields such as:

• Housing
• Benefits
• Insurance
• Superannuation
• Other work related matters
• Schooling & education
• Homecare
• Legal reference

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. See more about the Library here.

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. e.g. callers who phone the Society needing advice or information, are supported by the contributions all our members.

Companionship

Many PWME/CFS are isolated and lonely. Membership offers them companionship with people who understand their condition. e.g. 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 :

• Receive specific information through organised “talks” from professionals
• Exchange information, advice and support through unity
• Have a general chat
• Get together to raise awareness
• Support group development
• Support group support including awareness brochures, banners, posters and merchandise.

Social Worker

Provides a number of services to callers who are both members and non members including verbal advice and information with regard to:

• Medical, practical (including schooling) and emotional issues (family)
• Counselling – general and referral system
• Specific doctor’s database information
• Community Education
• Support Group information

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 and more.

Seminars

We organise educational seminars for our members. e.g. 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. e.g. Through a grant from the Paul Newman Foundation, $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. e.g. 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.