Around 200,000 people in Australia suffer from a debilitating illness often branded with the unfortunate name of chronic fatigue syndrome (CFS).
I say “unfortunate” because this implies patients are simply tired, run-down, burnt-out or overly stressed.
But myalgic encephalomyelitis, or ME/CFS as it is now more commonly called, is a serious and incapacitating disease that can have a devastating impact on a patient’s life.
- profound and unexplained fatigue for more than six months
- memory or concentration difficulties
- muscle pain (myalgia) and weakness
- joint pain
- sleep disturbances
- flu-like symptoms
- light headedness, palpitations, breathlessness
- heightened sensitivity to light and sound
- tender lymph nodes, sore throats
- new sensitivities to food, medicines or chemicals.
Explainer: what is chronic fatigue syndrome?
Initially bewildered by their incapacitating fatigue, many ME/CFS patients continue trying to go about their daily lives. But such efforts come at a severe cost. Even small amounts of activity can trigger “crashes” called post-exertional malaise that worsen symptoms, sometimes for many days.
Simple activities such as showering, grocery shopping or meeting a friend for coffee become difficult, if not impossible. Sadly, for around 25% of patients, symptoms are so severe they remain bed-bound or house-bound, and suicide risk is elevated.
Most patients face a major challenge getting a diagnosis. One UK study found less than half of doctors were confident with the diagnosis or treatment of ME/CFS and more than 85% of patients go from doctor to doctor for over two years without a diagnosis.
What we know.
The underlying causes of ME/CFS have proved difficult to pinpoint. For many patients, blood and pathology testing are entirely normal.
This has led some to suggest ME/CFS is a psychological condition. In 2011, the findings of a clinical trial suggested patients could recover through psychological therapy (cognitive behavioural therapy or CBT) and graded exercise therapy. These findings have fuelled debate as to whether ME/CFS might be a disease of the mind.
But a landmark US study examining nearly 10,000 research publications suggested otherwise, concluding that ME/CFS is a serious, chronic, complex and systemic disease.
Criticisms of psychological and exercise therapy for ME/CFS have been widespread, with over 50 published letters in leading scientific journals (BMJ, Journal of Health Psychology, Nature, Lancet) raising serious concerns about the robustness of the claims.
While exercise can clearly benefit patients with a wide range of illnesses, physical activity can cause a rapid deterioration of symptoms in patients with ME/CFS.