May is ME/CFS Awareness Month, shining light on a debilitating condition that remains largely misunderstood. 

The Illawarra ME/CFS, Fibromyalgia and Long COVID Support Group, led by co-ordinators Deidre Backhouse and Margie McGrath, now assists more than 450 people across the region who are living with these conditions. 

Studies estimate Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affects between 0.4 to 1 per cent of the population. The Illawarra ME/CFS Support Group estimates that this could potentially include 3000 people in the Gilmore region, yet it remains to be one of the most poorly understood invisible illnesses.

ME/CFS is a serious, disabling condition that affects every system in the body, forcing approximately 75 per cent of people with the condition to give up work entirely. 

“Many people don't believe this condition. But, I don't believe that people mean to disbelieve. It's just that it's so hard to understand,” said Margie.

ME/CFS symptoms include extreme fatigue, cognitive dysfunction (difficulty thinking clearly), unrefreshing sleep, widespread pain, gastrointestinal issues, dizziness when standing, and sensitivities to light, smell, sound, and temperature. The hallmark feature of ME/CFS is post-exertional malaise (PEM), a severe worsening of symptoms after even minimal physical, mental, or social activity.

“We have the privilege of being moderate but it’s so easy to forget there are millions of people lying in bed in a darkened room in pain…that's why I use the word forgotten,” said Margie.

Fifteen-year-old Mim is among those battling this condition in the Illawarra. Her mother Amy is her full-time carer, a situation that is common for families affected by ME/CFS. 

Last Sunday, they participated in the Blue Sunday Morning Tea, raising awareness and funds for Emerge Australia, a national organisation which provides research and support for people living with ME/CFS. Over 250 people participated in support of Mim as an effort by family and friends.

The support group which has operated in the Kiama Community since August 1989, hosts two monthly morning teas in Wollongong and Kiama, plus two Zoom meetings, an informational meeting featuring specialists and resource guidance, and a casual chat session. 

“It might be asking questions. It might be having a laugh. It might be having a cry,” said Deidre.

The group also provides information on the latest research to its members as well advocating for its most isolated members. 

“If you end up in hospital, people need to know how you're getting treated. Last year, I was the advocate for a woman who ended up in that situation,” said Deidre. 

The Kiama Lions Club has twice donated to the group, to which Deidre and Margie expressed their gratitude for their continued support. 

“Most of the time we are just scraping by to support people in our group,” said Deidre. 

As a group of “unwell people helping unwell people,” as Margie describes them, their message is clear, “no one should do this alone”. 

For more information or to donate, visit their website at mecfsfmwollongong.org or contact the national support organisation Emerge Australia at emerge.org.au.