Myalgic Encephalomyelitis (ME), or more commonly labelled as Chronic Fatigue Syndrome (CFS), is an immunological and neurological dysfunction disorder. It is characterised by a severe worsening of symptoms after minimal physical or cognitive exertion. ME is a chronic illness that lasts for years and is often lifelong. It is a controversial diagnosis in need of more awareness and understanding. Due to a lack of medical education and government research around ME, many affected by the disease remain misdiagnosed or even dismissed, being wrongly told their severe disabilities are a result of their imagination.
There have been various articles discussing ME in prominent newspapers all around the world, such as the New York Times, The Huffington Post, The Australian. Despite this, the stigma seems to continue surrounding the disease, mostly due to a lack of understanding by both the medical community and the general community. It is an invisible illness, so people will not often “look sick” on the outside, yet their lives are often so compromised that the majority of suffers cannot work, some remaining permanently housebound. Researchers have estimated, among those who have received a diagnosis, that approximately 150,000 Australians, 1-2.5 million Americans, 250,000 British people, and 400,000 Canadians have ME.
“I don’t know is a beautiful thing. I don’t know is where a discovery starts.”
As far as the cause of ME goes, there is a wealth of research regarding the medical theories. ME is a culmination of a variety of pathogenic pathways. Despite the stigma associated with the disease, there are a large number of studies on the biology of ME, thankfully discrediting the idea that our suffering is “all in our heads”. The most recent, was a study by Queensland’s Griffith University, which confirmed that one physiological cause of ME is attributed to a fault in gene expression, specifically in the calcium receptors in the immune cells of the body. Other studies have attributed the cause to the body’s ability to produce and transport energy; to metabolism, digestion, gut bacteria; to excess molecules regulating inflammation; reduced white matter in the brain; lowered oxygen uptake; blood pressure, the circulatory and cardiac systems; biochemical abnormalities; viral or other infections such as glandular fever, the Epstein-Barr virus, Q Fever, the River Nile virus.
In relation to the studies that examine the viral cause of ME, it is proposed that viruses can trigger a cascade of events throughout the central nervous system, which in turn causes chronic activation of the immune system. The activation results in a diffuse neurological dysfunction that leads to changes at the cellular level. The virus replicates continually, leading to neuroinflammation that causes brain function to destabilise. Physical or psychological stress can cause immune vulnerability. Viruses go latent, meaning they can reactivate once in the cells, thus repeat their damaging patterns. An elevation in cortisol levels, due to stress, is what can cause their reactivation.
Treatment can help manage ME, but there is no known cure. Currently, treatment is geared towards minimising the symptoms, and managing them via various nutritional and lifestyle changes, including pacing.”It doesn’t matter what you once were, you cannot do it anymore” – says a fellow ME sufferer Jennifer Brea – illustrating how much the illness changes our lives and the resulting emotional impact it can have. Jennifer Brea is an American film-maker and ME/CFS activist, who presents ME perfectly in her TedSummit talk to raise awareness, titled “What happens when you have a disease doctors can’t diagnose“. The talk emphasises the importance of further medical research in order to find more effective treatments, and maybe even one day, a cure. Encouraging the medical professionals to expand research in ME, Brea acknowledges “I don’t know is a beautiful thing. I don’t know is where a discovery starts.” After all, various autoimmune diseases were mislabeled as “hysteria” before doctors were able to identify the true pathophysiological causes, and before the proper diagnostic tools were invented.
For further information about ME, please visit: Emerge Australia – ME/CFS