Within the space of four years, a wife became a carer for her husband, and he became a carer for her – this is just one of the many life experiences that make up the Illawarra ME/CFS, FM & Long COVID Support Group.

Deirdre Backhouse, co-coordinator of the group, explained to The Bugle that while other members may not fully understand what others experience, the group aims to offer support to people who reach out, regardless of the severity of their illness.

“The Support Group was just tremendous in helping us deal with the anger, frustration and disbelief that your whole life has changed,” she said.

“It [inherent disabilities or acquired injuries or disability] impacts the carer very much as well as the person who is ill for whatever reason.”

An inherent disability can be described as a condition that a person or human is born with and an acquired injury and/or disability typically is inferred from accidents, illnesses, or other medical events.  

For National Carers Week which runs from 12-18 October, recognising and celebrating carers is the focus and the theme is “You are, know, or will be one”, which surmises the statistics of Australians who provide care to a family member or friend – close to almost 10 per cent of the population or nearly three million Australians.

For many full-time carers, it consists of round-the-clock care and it can be all-consuming.

“Caregivers juggle responsibilities like coordinating appointments, keeping track of medications and symptoms, managing daily routines, advocating within healthcare and educational settings, and offering emotional support,” Deirdre said.

While there is support for carers within non-governmental organisations, Deirdre concedes the support from government departments can be frustrating at times, especially with the NDIS.   

“Because the science has not caught up with illnesses, and this could be for lots of reasons too,” she said.

“It means that we can’t apply, or it's very difficult to get funding from the NDIS, because the administration hasn’t caught up with the science.”

When asked if the relevant government agencies provide the necessary structure to carers, Deirdre said that there is a need for greater collaboration and the simplification of government agencies and/or services.

Within the Illawarra ME/CFS, FM & Long COVID Support Group is affiliated with Emerge Australia which is the leading national patient organisation for ME/CFS in Australia and is trusted by the government to provide evidence-based advice.

ME stands for myalgic encephalomyelitis, CFS is chronic fatigue syndrome and FS is fibromyalgia syndrome.

In November 2024, the Federal Minister for Health and Aged Care Mark Butler MP opened the event Parliamentary Friends For ME/CFS at Parliament House in Canberra, where Emerge Australia CEO Anne Wilson thanked Minister Butler for guiding a $1.13 million funding commitment earlier in 2024.

The event called on Australia’s leaders to commit to: investing in clinical education, ensuring equitable access to health care, the NDIS and other disability supports and advancing research into ME/CFS.

For the carers of Australia during this week of recognition Deirdre, and the Illawarra ME/CFS, FM and Long COVID support group have this message: “To our caregivers in the community, thank you for your respect, compassion and patience among many other incredible personal qualities that connect us to a better quality of life”.

For more information on the Illawarra ME/CFS, FM and Long COVID Support Group head to: https://mecfsfmwollongong.org/about-us

United as one and many Photo: Supplied