Carly Tomlinson spent more than 18 months lying in bed after being diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS), in 2012.
“It makes you feel as though you have the flu every single day – sore throat, headaches, fevers, aching body, inability to think, sensitivity to light and noise – all that jazz,” the 24-year-old East Bentleigh woman said.
While she is now back and working at a tea shop 10 hours a week, Ms Tomlinson still takes between 14 and 22 tablets daily. She needs two tablets of one of these medications, imported from Germany, every four hours to prevent her from fainting.
“[Chronic fatigue] weakened my body more than I ever saw coming,” she said.
“It makes you feel as though you have the flu every single day — sore throat, headaches, fevers, aching body, inability to think, sensitivity to light and noise — all that jazz.” — Carly Tomlinson, chronic fatigue sufferer
Ms Tomlinson also developed four separate heart conditions, was unable to digest dairy and gluten and needed to start wearing glasses.
ME affects between 100,000 to 250,000 people in Australia, leaving around 25 per cent of them bed-bound. Experts say it is a nightmare to diagnose because it has a range of about 50 different symptoms, of which 20 occur in about 70 per cent of patients.
It is a disorder that has no cure and its cause is still largely unknown. It triggers a range of conditions including long-term fatigue, and muscle and joint pain as well as damage to the cardiovascular and digestive systems.
But now researchers may have found a key to explain why chronic fatigue syndrome can wreak such havoc on the body.
Scientists at Queensland’s Griffith University have discovered that critical cell receptors that help regulate human cells can be damaged by an infection or severe physical or psychological trauma.
Scientists at Queensland’s Griffith University have discovered that critical cell receptors which help regulate human cells can be damaged by an infection or severe physical or psychological trauma
There are many different kinds of receptors found throughout cells that help them function normally. It is common for receptors to make harmless, tiny changes to the cell, known as polymorphisms.
But in people with ME the damage is done to the so-called “threat receptors” which, like white blood cells, deal with potential attacks to the body.
While the researchers are yet to discover if this damage to the cell receptors causes either a loss or an increase in function, they do know that because these receptors are connected throughout the body any malfunction can cause extensive damage.
Professor Don Staines, the co-director of Griffith University’s National Centre for Neuroimmunology and Emerging Diseases, said the next step is to find out “why this happens to some people and not others”.
Dr Staines, who is the head of a ME research team, said the term “chronic fatigue” is hated throughout the medical profession.
“If one more person says to me “Oh. so I guess you’re just really tired then, that’s all?’, I really might crack it.” — Carly Tomlinson
Although it’s known as chronic fatigue syndrome, he said fatigue is an unfortunate word because it trivialises the severity of the condition. He said the word fatigue is better applied to the slow recovery time.
Dr Staines said the formal name of the illness, myalgic encephalomyelitis is far more accurate because in medical terms it relates specifically to brain and spinal cord inflammation with associated muscle pain.
But as frustrating as Dr Staines finds chronic fatigue to be as a medical term, Ms Tomlinson is weary dealing daily with people’s assumptions about her condition.
“If one more person says to me ‘Oh, so I guess you’re just really tired then, that’s all?’, I really might crack it.”