"The ME/CFS Empowerment Project will enhance
the quality of life and facilitate greater community participation for
people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
and Fibromyalgia Syndrome (FMS). A Community Development Worker will
be employed 2 days a week to: work with sufferers to reduce social isolation
and improve mental health; facilitate support group meetings and self-management
courses; empower volunteers delivering the Society’s services;
increase awareness in the community; create, maintain and disseminate
a directory of services helpful to ME/CFS and FMS sufferers; and be
a source of information for the government and non-government sectors
and the community.
"The program will address the debilitating
impact of ME/CFS which can result in exposure to factors that lead to
social exclusion, including loss of social contacts, financial independence,
exposure to depression, etc. Establishing support groups, providing
self-management courses and outreach services, and distributing information
will work towards diminishing these factors of social exclusion”.
"This exciting project means the Society now
has significant resources to deliver services to people with ME/CFS
and FMS in the ACT. A Community Development Worker will facilitate the
monthly support groups, assist in the delivery of self-management courses,
put together and update a service directory for people with ME/CFS and
FMS and a whole lot more over the next three years. Further, it is intended
that the Community Development Worker or a Telephone Information Support
Service (TISS) volunteer will be contacting members every six months.
"All of the above services are designed to
help people with ME/CFS and FMS, and it is important that the Society,
both Committee and Members, makes sure that the services delivered are
the ones required by people with our illness. It is an ongoing complaint
by people with ME/CFS and FMS that they receive little in the way of
resources from Governments – this has changed, at least in the
ACT, for the next three years. However, if we don’t take advantage
of this grant then it will be more difficult to get resources in the
future.
"What does this mean? It means if the services
provided by the Society are not what you need to help manage your illness
or become involved in the broader community please let us know. While
everyone on the Committee (and the vast majority of the membership)
has considerably more experience with ME/CFS and/or FMS than they would
prefer, they cannot think of everything, not least because of the wide
variety of issues raised by these conditions. If the services provided
are the ones you’ve been looking for, please come along if you
are able – the only reason they are being provided is to help
the ME/CFS and FMS community. If you are not able but would still benefit
from these services, please let us know, as that is an unmet need and
exactly the kind of thing we’re trying to identify so that it
can be met in the future.
"Also, while being able to employ a worker
for 2 days a week will be a great help, it does mean more work for the
Committee. To make this project successful, we still need assistance
from other sources and that means volunteers. The Committee is working
hard to come to grips with the implications of the grant. There are
a number of tasks that need to be undertaken to make it work. For instance,
financial/accounting expertise is urgently needed as well as people
with data base computer skills, as well as people who could assist with
publicity and administration. If you can assist in these areas or know
of someone who could assist a couple of hours here and there, we would
love to hear from you as soon as possible.
"It may be that some of you, especially those
who have had CFS/FMS for some time and have learned to manage your illness,
will not need to access the services provided. If that is the case I
invite you to support the Society in some other small way. For example
even coming to the Support Group meeting and being an active listener
to those in need or sharing how you are coping can be tremendously helpful,
especially to those who are newly diagnosed. The more people we have
attending support meetings, the better chance we have of establishing
more groups in different parts of Canberra.
"It is going to be a challenging year, but
one of great progress for people with CFS and Fibromyalgia as the awareness
and implications of the illnesses will become much more accepted in
the ACT community. We look forward to seeing you at the support group
meetings, hope that the service directory (due out in the middle of
the year) assists you in finding relevant help, and hope that you benefit
from this grant. However, if you find the services provided are not
relevant to your particular situation please contact us – this
opportunity will not be around forever, and it is important to take
advantage of it to help you, the members, live fulfilling lives with
ME/CFS and/or FMS."
