A yoga class leaves Jennifer Bailey-Tuck so exhausted and debilitated she’s in bed for three days.
The mother of two, in her 30s, has been living with myalgic encephalomyelitis/chronic fatigue syndrome (MECFS) for 23 years and describes her condition as “almost like a hangover".
Researchers say more work must be done on diagnosing chronic fatigue, particularly as they probe links between MECFS and long COVID.
Ms Bailey-Tucky has lived for years with symptoms, including exhaustion so deep "it's difficult to be coherent or articulate".
"It makes even making decisions really difficult because it's like you're swimming through cotton wool” she says.
Initially diagnosed at 13, Ms Bailey-Tuck says each day is a series of calculated decisions about what two to three tasks she will do to minimise exhaustion, between rests.
She often uses a wheelchair on family outings to preserve energy because walking for an extended time can lead to her "crashing" for hours or even days.
"A yoga class put me in bed for three days. So, it's really about reducing the amount of work that my body's doing." Ms Bailey-Tuck says.
Ms Bailey-Tuck says she is "so thankful" to have a supportive family who help take care of her children and other day-to-day responsibilities.
For many living with this condition, it can be hard to come by such a supportive network.
Research attention on MECFS
Emerge Australia medical director Dr Richard Schloeffel says that, due to lack of funding and research, it's all too common for people to go undiagnosed and not believed.
Emerge Australia is an organisation that specialises in complex and chronic disorders, including MECFS.
"It's a very complex, difficult illness and I think we just don't, as GPs and as doctors, we just don't have enough attention on it," Dr Schloeffel said.
"This is a forgotten illness. It's just not easy to diagnose and treat."
Dr Schloeffel says that with the rising number of people presenting with long COVID more interest and attention is being brought to the research and diagnosis of chronic fatigue, due to the similarities of symptoms.
Long COVID is defined as a persistence of symptoms greater than three months after a coronavirus infection.
Dr Schloeffel highlights the similar symptoms of long COVID and MECFS, including cognitive impairment, shortness of breath and chest pain, falling blood pressure, bowel dysfunction and "post-exertional malaise", which is the extreme exhaustion felt after minor activity.
"All tissues and organs can be affected. A lot of pain, often in joints and muscles and nerve pain. And you see the same thing in MECFS," he said.
Some patients with MECFS can report up to 50 and 100 different symptoms.
MECFS affects around 250,000 Australians. About 75 per cent of those are women and 25 per cent are housebound and bedridden.
"It's not an imagined disorder. It's not a choice disorder. It's not psychosomatic or psychiatric. It's a biological pathological seal, a disorder of fatigue," said Dr Schloeffel.
What needs to be done?
Dr Schloeffel is continuing work on evidenced-based guidelines, and training GPs, doctors and specialists to identify, diagnose and treat MECFS, but says more needs to be done.
He says its been difficult in the past to get pensions for people with MECFS who are housebound and bedridden.
"The NDIS is really difficult to access for these patients because of the lack of clearness in the diagnosis of the problem" he said.
"We need money for research, we need money for teaching doctors, and we need a general education of the whole community. But then fundamentally, we need money to support the people who have these illnesses" he said.
Ms Bailey-Tuck is hoping that with the increasing number of people diagnosed with long COVID, we will begin to see more recognition and empathy for those living with chronic fatigue.
"My heart really goes out to everybody that's new to this with long COVID," she says.
"You know that their grief and their experiences are real and valid. And I hope that, you know, we do start to get that recognition."
