It is with great sadness to announce the death of Retha Viviers.
In 2002, Viviers was struck down by a mysterious persistent sickness following a series of infections post-surgery. She was 36; her daughters were 10 and two. Over time, her chronic rhinitis and severe headaches progressed until she was unable to stand up, let alone run or hike, as she’d once loved.
Born in Germiston in 1966, Viviers’s economics degree had taken her from market research to strategic planning in heavy industry. However, by the time she was finally diagnosed with myalgic encephalomyelitis (ME) in 2006, she was housebound and unable to work. The loss of her income put great strain on the family, compounded when her eldest daughter was also diagnosed with post-viral ME at age 18, confirming a genetic vulnerability.
With no drug regimen and no specialists in the country, the outlook was bleak. In 2012, Viviers formed a closed support group for ME/CFS (chronic fatigue syndrome) on Facebook and became aware of the desperate needs of hundreds of people.
She founded the ME CFS Foundation South Africa in 2015, a non-profit dedicated to support and advocacy for an “invisibilised” patient population, trapped in their bedrooms. Despite starting every day feeling like she had a heavy flu, a hangover and veins filled with cement, Viviers ran the foundation through a regimen of lying down to rest for an hour after every three hours online.
Retha Viviers died aged 55, the mean age of death for people with ME. Although ME has only rarely been cited as a direct cause of death, life expectancy is significantly lower than average, with a lower quality of life than MS, stroke, diabetes, renal failure, lung disease, heart failure and cancer.
News of her death saw an outpouring of grief, with messages from all over the world and international ME organisations.
The same phrases come up repeatedly: “A pure angel”, “fierce warrior”, “a truly great friend”, “mischievous sense of humour”, “steadfast support” and “love personified”.
With style, grace and never-ending compassion, she gave us all dignity. Viviers was dealt a tough hand but played it with aplomb and always a trick up her sleeve. Hope was her joker. DM168