Documentary explores debilitating disease ME

Lake Country resident says it’s an important look at an often mis-diagnosed disease

  • Jan. 3, 2018 11:10 a.m.

By Cindy Downey

Over half a million Canadians, the majority of them women, suffer from this debilitating physical disease, correctly known as myalgic encephalomyelitis (ME). The 2017 documentary, Unrest, short listed for an Oscar nomination, powerfully depicts the suffering, isolation, desperation, indeed life shattering nature of this illness. Careers ended, families torn apart, loss, despair, uncertainty, and the fear of succumbing to ME as others have done.

The courage and will of the four main ME victims in this movie is inspiring. Others honoured in the film, having found the pain and desperation unbearable, have taken their lives. ME has been unjustly stigmatized, and patients marginalized, for decades. This award-winning film shows the world of ME is a very real, and vastly more serious disease than the pejorative label, “chronic fatigue syndrome” implies. Unrest, unmasks ME. This documentary airs on PBS, Independent Lens, Jan. 8.

ME has been likened to a severe flu-like illness without end; often triggered by any number of infections. Once acquired, recovery is rare. Twenty-five percent of its victims are house, or bed-bound; 75 percent are unable to work. “Average age of onset is 33.” A vast number, as many as 90 percent, have not been diagnosed. World-wide numbers are estimated at 15 to 30 million. From 2014 to 2015, Canada saw a 150,000 increase in diagnoses. Loss of productivity costs billions.

Although common garden variety lab tests are usually normal, deeper investigations reveal a host of immune system, and other abnormalities. Classified as a neurological disease by the World Health Organization in 1969, this devastating illness, was nonetheless renamed the misleading term “chronic fatigue syndrome” in the 1980s. Despite numbers affected, there is no Health Canada approved treatment. Medical education is often absent, or worse, misleading. Governments continue to spend mere pennies per patient on this prevalent, invisible health crisis.

Finally, in 2015, the prestigious U.S. Institute of Medicine (IOM) described ME as “a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.” IOM diagnostic criteria for ME include: The cardinal symptom post-exertional malaise, as well as profound fatigue of more than six months duration, substantial reduction in activity level, unrefreshing sleep, and at least one of cognitive impairment or orthostatic intolerance.

Of these, post-exertional malaise (PEM) is the hallmark, or distinguishing feature. Even minor physical or mental exertions can leave persons with ME extremely exhausted, and causes a flare of other symptoms. One of the most significant of these is orthostatic intolerance; feeling lightheaded, faint, dizzy and nauseous with upright positions. Several other debilitating symptoms include: Gastrointestinal problems, pain, both joint and muscular, cardiac arrhythmias, recurrent flu-like symptoms, unusual headaches, new or increased allergies and sensitivities, tender lymph nodes and, low grade fevers.

Unrest, takes us through a journey of revelations of the unvarnished truth of the impact on the lives of real people, with this very real disease. It reminds us, as well, that much more can, and must be done.

Unrest airs on PBS Independent Lens, Jan. 8.

Cindy Downey is a Lake Country resident

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