We all lead busy lives and, for most of us, feeling a little rundown following long hours in the office or chasing after children is considered normal and can be cured with a good night’s sleep.
“Feeling tired seems to be a part of most people’s lives these days,” says Amanda Kelly, the chief executive of Emerge Australia. “There’s always more to do and more demands on us.” Yet what happens when that tired feeling doesn’t leave or perhaps becomes worse?
“When the tiredness is accompanied by other things, like aches and pains, dizziness, stomach upsets, bad headaches or feeling ‘fuzzy’ in the brain, these could be indicators that something more is going on,” says Amanda. One of those illnesses could be myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). It’s a neurological illness (affecting a person’s nervous system) and about 180,000 Australians suffer from it. Emerge Australia was established in 1980 to raise awareness of ME/CFS.
Although the World Health Organisation recognised ME/CFS in 1969, few people know about it. Dr Peter Dobie treats patients with chronic fatigue and says there is still some misunderstanding, even in the medical industry. “A lot of doctors still don’t believe in it,” he says, warning, “it is a very real illness.”
Earlier this year, the Institute of Medicine in the US released a report aimed at redefining ME/CFS. The authors wrote: “ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” It suggested that it be given a new name – systemic exertion intolerance disease (SEID) – to better capture its characteristics. “This is further recognition that it is a physical illness,” says Dr Dobie.
Amanda Kelly says there are many factors that can trigger ME/CFS, including genetic predisposition; acute or chronic infection (including viral, bacterial and/ or parasitic infections); a flu-like illness; exposure to chemicals, environmental pollutants or heavy metals; immunisation; and severe physical or emotional trauma. “The research is not conclusive about the actual trigger, but these have all been linked with the onset of the condition,” she says.
Managing fatigue
The effects of ME/CFS range in severity for each sufferer, so a specific management plan should be developed by a doctor, says Dr Dobie, who says he has seen improvements in some patients with nutritional supplements and antibiotics. However, he adds, “Mild cases will get better with diet and adequate sleep.”
Amanda Kelly says about 25 per cent of people affected by ME/CFS never gets better. “The condition can cause people to be bed-bound, needing assistance with feeding and cleaning themselves,” she says. “They can be house-bound, unable to manage walking up and down stairs. Others [more than 50 per cent of those affected], can be limited in their activities, unable to work or study full-time. For those mildly affected, they can manage to look ‘normal’, but are consistently looking to conserve their limited energy.”
Georgia Eastley, 22, from Tasmania, knows all too well the impact that ME/CFS can have on daily life. In April 2009, the then teenager was playing a game of basketball and suddenly couldn’t move her arms or legs. “I was nauseous, had a headache, felt extremely fatigued and was unable to breathe properly. I felt like I had been hit by a truck,” she recalls. Georgia sought medical help straightaway, without much success. “It took many different doctors and lots of tests before I was diagnosed with ME/CFS in November of 2009. However, once I received a diagnosis, the doctors that diagnosed me were unable find any effective treatments to help relieve the suffering.”
Although Georgia tries to manage her condition, she says it still affects every aspect of her life. “Everything I do is dependent on my health. Some days I can only leave bed for the bathroom and to get drinks,” she says. “Other days I can get up and spend the day on the couch. And on good days I can leave the house. On these particular days I may look healthy on the outside; however, on the inside my body is still fighting hard.”
Symptoms of fatigue
There are many symptoms of ME/CFS, but not all will occur in patients with the illness. “The major symptom of ME/CFS is that you cannot recover from activity – either mental or physical – in the usual ways and within normal time-frames [such as a good sleep, a lie-down, time-out],” says Amanda. “When a person has ME/CFS, they commonly experience overwhelming ‘post-exertional malaise’ from minimal mental and physical effort.”
Disrupted sleep, memory loss, difficulty concentrating, pain or aches in the muscles, joints or head, increased heart rate, gastrointestinal changes, such as nausea, bloating, constipation or diarrhoea, and a flu-like feeling can all be signs of ME/CFS.
Top tips to re-energise
1 Eat a healthy diet with plenty of fruits and vegetables.
2 Ensure you’re getting enough sleep (ideally seven to eight hours per night).
3 Take time out to relax and de-stress.
