Research shows ME/CFS can mean poverty

A national survey has found two-thirds of Australians with the debilitating condition Myalgic Encephalomyeltis/Chronic Fatigue Syndrome (ME/CFS) are living below the poverty line.

The survey report was released by ME/CFS support and advocacy body, Emerge Australia.

CEO of Emerge Australia, Dr Heidi Nicholl, says the research shows that for many people the onset of ME/CFS marks the beginning of a life lived in financial insecurity and poverty.

“Eighty-nine per cent of respondents stopped or significantly reduced their paid working hours. Less than half the participants (49 per cent) were engaged in some form of work, education or training at the time of taking the survey,” Dr Nicholl says.

“Unsurprisingly, cost was a significant barrier to accessing necessary healthcare. Provision of telehealth and home visits via Medicare is therefore particularly important.”

The survey also shows that a lack of GP knowledge about ME/CFS was identified as the greatest barrier to accessing appropriate services.

“Accordingly, better informed allied health practitioners and GPs were the most commonly selected options that survey respondents told us would improve their experience of the healthcare system,” Dr Nicholl says.

“Emerge Australia recognises that GPs are limited in their ability to access up-to-date information on ME/CFS, and recommends that the Royal Australasian College of Physicians ME/CFS 2002 clinical guidelines be replaced with up-to-date, fit-for-purpose guidance to support GPs and other practitioners.”

Dr Nicholl says the Covid-19 lockdowns resulting in isolation from family and friends has now given many Australians a sense of what is an everyday reality for people living with ME/CFS.

“For many people, ME/CFS means living in a lifelong lockdown.

“Some of the responses to the Covid-19 pandemic, such as greater access to telehealth, online education and working from home, can also be a silver lining to people with ME/CFS.”