Remembering Retha

On Sunday 12th June, Mlindeni and I went to visit Retha for the last time. As Sampson drove us along the coast for an hour and a half to her friend’s flat in Strand, I lay in the back of the car on a mattress wedged into the boot and tried to keep calm. It’s the only time I’ve left this place since we moved in.

Retha looked distressingly frail, but was as vivacious as ever. We three packed a lot of joy into the 90 minutes we spent together, while Sampson bonded with Boet. Although it was apparent she couldn’t continue to survive the onslaught of the cancer that was drowning her in ascites, Retha had defied the odds for 2 years already, and her spirit seemed invincible.

Four weeks later, she was gone.

Even though her passing was anticipated, the tsunami of upset through the week of her memorial was devastatingly depleting for the Whatsapp group of mostly bed-bound folk she used to watch over. Writing Retha’s obituary was a way to channel my grief and uplift our collective sorrow. To stand witness to this darling woman’s life, her bravery and her defiance of the shackles suffering imposed upon her.

It was published in the Daily Maverick 168 newspaper on 30th July but, to mark Severe ME Awareness Day 2022, I am publishing the uncut version here so the links might be available as a resource to people with ME or Long Covid. As someone with severe ME, able only to work for an hour or two on my bed in the afternoon, to put it together and then recover from writing it took me the best part of a month.

NB: Most news outlets are still using ‘long Covid’ but I am following patient-led resources in using upper case for both, dignifying their disease with its own name, recognising a pathology in its own right.

* * *

An Angel and a Warrior: Retha Viviers, founder of The ME CFS Foundation South Africa

By Sam Pearce

Retha Viviers (28 October 1966 – 10 July 2022) always said “We can’t change the cards we are dealt, just how we play the hand.” 

In 2002, Retha Viviers was struck down by mysterious persistent sickness following a series of infections post-surgery. She was 36, her daughters were 10 and 2. Gradually, her chronic rhinitis and severe headaches progressed to being unable to tolerate standing up, let alone the running or hiking she loved. 

Born in Germiston in 1966, Retha’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, which was compounded when her eldest daughter was also diagnosed with post-viral ME aged 18, confirming a genetic vulnerability. 

With no drug regimen and no specialists available in this country, the outlook was bleak. In 2012 Retha formed a closed support group for ME/CFS on Facebook and became aware of the desperate needs of hundreds of chronically ill people. This gave her a new purpose and she founded The ME CFS Foundation South Africa in 2015, an NPO dedicated to providing support and advocacy for this invisibilised patient population, trapped in their bedrooms. Despite starting every day feeling like she had a hangover, heavy flu and veins filled with cement, Retha administered it by sticking to a strict regimen of lying down to rest for an hour after every three hours’ online.

“Nothing about us without us”

The course of Retha’s lifetime mirrored the history of energy-limiting chronic illness

‘Benign Myalgic Encephalomyelitis’ was the name given by Dr Melvin Ramsay on identifying the polio-like syndrome displayed by 292 staff at Royal Free Hospital in London in 1955. There had been many other outbreaks showing similar inflammation in the brain and spinal cord, such as those affecting 198 people at the Los Angeles County General Hospital in 1934 and another 488 in Iceland around 1948. 

In 1969 ME was defined as a neurological disease by the WHO. But in 1970 two male psychiatrists reexamined Ramsay’s case notes and decided, simply because most of those affected were female nurses, that a more likely explanation was “epidemic hysteria”. McEvedy and Beard came to this conclusion without interviewing any of the patients themselves, many of whom remained too ill to work decades later. 

Their misogynistic hubris led to bias, stigma and staminism that was to stymie funding for biomedical research into ME for half a century and blight the lives of millions.

In 1984, another mass outbreak in a super-affluent suburb near Lake Tahoe, Nevada prompted the coining of the tabloid moniker “Yuppie Flu”. The US Centers for Disease Control renamed ME “chronic fatigue syndrome”, further trivialising the disease. Conflating it with other conditions causing fatigue (such as depression) prevented recognition of ME’s hallmark symptom post-exertional malaise, where sufferers crash with dramatic worsening of symptoms from 24 hours after any physical or mental exertion.

By the 1990s, an increasingly influential group of psychiatrists and psychologists were dominating the field of CFS research. Their insistence on a psychosomatic rather than organic cause for the disease was most convenient for both governments and medical insurers seeking to avoid paying out disability grants.  

This collusion reached an apex in the infamous PACE trial, a £5 million research project partly funded by the UK Dept of Work and Pensions. Results published in 2011 seemed to prove the efficacy of graded exercise and cognitive behavioural therapy, but heroic efforts of citizen scientists exposed huge flaws in the findings, such as changing criteria for recovery halfway through the trial. More than 100 researchers and clinicians signed an open letter to the Lancet requesting an independent reevaluation of the study and demands for an enquiry were made in the UK Parliament.

A seachange in the narrative about ME was marked in 2017 with the groundbreaking Oscar-nominated documentary Unrest by Jen Brea, in which Retha appeared. Finally people with chronic illness were telling their own story, in the spirit of “Nothing about us without us”.

Relentless advocacy by ME organisations finally led to an overhaul of CDC definitions in the US in 2017 and an updating of the UK’s NICE guidelines in 2021 banning graded exercise therapy as harmful. 

Missing Millions

There are #MillionsMissing due to ME, which is twice as common as MS. 25% of them end up bed bound and unable to cook or care for themselves. The most severe don’t have enough energy to swallow, have to be fed via tube or intravenously and suffer periodic paralysis. Noise, light and even touch are excruciatingly painful. 

How do you cope when you have a disease without recognition, when doctors refuse to treat you and hospitals turn you away? When you are too ill to march in protest?

You seek comfort in solidarity. 

ME support groups online are the tightest bunch of friends who’ve never met each other you’ll ever find. Not only did Retha personally provide medical resources, basic living necessities and even emergency housing to hundreds of desperate individuals over the years, but the networks she created sustained thousands of people. 

Retha’s efforts to get the disease featured on Carte Blanche in 2017 brought ME to the attention of the South African public for the first time. Her descriptions of her existence helped families and colleagues understand what patients were going through. Annually, she led online campaigns for International ME Awareness Day on 12th May, Florence Nightingale’s birthday. (It is suspected that Nightingale suffered from ME as, after contracting bacterial illness in the Crimea, she spent most of her latter years bedridden.)

But mostly it was Retha’s weapons-grade empathy which inspired a culture of care and mutual aid in the local ME community. She checked in daily via Whatsapp with dozens of bedridden people too ill to be on social media, and gave them enough hope to endure.

Links to Long Covid

In January 2020 Retha was diagnosed with advanced ovarian cancer. When the public health system gave her a few months to live, the community she had created refused to accept it. A crowdfunding campaign raised substantial amounts for private treatment which prolonged her life for more than two years. 

Despite the gruelling burden of chemo and surgeries, if anything she stepped up her work from her bed. 

In July 2020, Dr Anthony Fauci commented that an emerging pattern of extended Covid-19 symptoms (chest pain, muscle and joint pain, inability to be upright, heart palpitations, shortness of breath, cognitive incapacity, nausea plus an overwhelming exhaustion unrelieved by sleep) was “highly suggestive” of ME. Retha opened her support group to our Long Covid cousins during the critical period of the pandemic when knowledge was thin on the ground. People with ME who had been living in lockdown for decades and already experts at surviving social distancing were ready to offer the advice they were not given – particularly the critical need to Stop, Rest, Pace to avoid permanent disability. 

When Professor Resia Pretorius published her groundbreaking study on microclots in Long Covid in 2021, Retha approached her to suggest an investigation into whether there was similar coagulation pathology in the South African ME population. With ethics approval granted, Retha set about asking for participants and dozens of volunteers from her Foundation networks enthusiastically donated blood samples to the study in early 2022. 

Investigator, PhD student Massimo Nunes, states that “preliminary findings suggest similar abnormalities in the coagulation system of ME/CFS individuals, comparable to that found in cardiovascular disease”. Although results need to be corroborated with a larger sample size, they may lead to the discovery of novel inflammatory molecules involved in the pathology of both ME and Long Covid.

Evidence of hypoxia compromising oxygen delivery to muscles, as well as reduced blood flow to the brain, suggests that if our disease had been renamed ‘chronic oxygen starvation syndrome’ in the 1980s rather than being dismissed as ‘psychological’, there might have been treatment for Long Covid sufferers by now.

In late 2021 Retha did a publicity drive including another Carte Blanche feature on the links between Long Covid and ME which emphasised how the pattern of institutionalised gaslighting was repeating, with governments and medical insurers denying benefits to millions more sufferers.

In the months before her passing, Retha was still supporting the Foundation’s Long Covid ambassador Mlindeni Gabela’s attempts to alert the media to the fact that, if 1 in 10 people develop chronic illness after Covid, our government should not slavishly follow UK and US policy abandoning mask mandates but heed the huge risk that post-viral disability poses to the economy.

Death of a “pure angel”

Retha died aged 55, exactly 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, as well as offering a lower quality of life than multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and cancer.

The news provoked an outpouring of grief, not just from across South Africa but across the globe. Her kudoboard displays personal messages from the Netherlands, Germany, Italy, France, Spain, UK and USA as well as tributes from Canada’s Open Medicine Foundation, the World ME Alliance and ME organisations in US and UK, Ireland and New Zealand. 

The same phrases come up repeatedly: “A pure angel”, “fierce warrior”, “a truly great friend” “mischievous sense of humour”, “steadfast support” and “Love personified”. 

Her “dancing eyes and wide smile” will never dim in our memories. With her style, grace and never-ending compassion, she gave us all dignity. Retha was dealt a tough hand but played it with aplomb and always a trick up her sleeve. Hope was her joker, and she taught us to hang onto it for our life’s worth.

Contribute to Retha’s #ImHopeful Legacy Fund on The ME CFS Foundation South Africa website.

Thanks to Boet, Claire and Stephanie for sharing her with us, and supporting her to help so many xxx

This entry was posted in 00 M.E., 30 Back in SA and tagged , , , , . Bookmark the permalink.

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