“Living with ME is a bit like living in a prison. The size of your cell depends on how ill you are. It can be your bed, it can be your home and when you leave your cell it comes at a high price, because you risk the chance of relapse.”
It is International Myalgic Encephalomyelitis (ME) Awareness Month and today’s ME Awareness post is dedicated to Retha Viviers, founder of the ME CFS Foundation South Africa.
We have never met you but feel that we know you through your endless and selfless advocacy work to raise awareness for people with ME in South Africa.
Retha founded the ME CFS Foundation South Africa, the only ME charity in South Africa, in 2016 because there are an estimated ± 110 000 patients in South Africa; there is no other private or government assistance for patients; 75-85% of patients are too ill to work; and there are no disability benefits available for South African ME/CFS patients. Retha has made it her life mission to raise awareness for ME and to practically support patients in dire need.
Retha started her career in Market Research and moved onto Business Analysis and Strategic Planning. She worked in the petroleum, cement and construction industries. Projects ranged from Market Research, Health and Safety compliance, Feasibility Studies and Project Management. She was diagnosed with ME and a few years later formed a closed support group for people with ME (and Fibromyalgia) on Facebook in November 2012. She then went on to establish the ME CFS Foundation South Africa, a new purpose in life, one of helping others in the same or worse situation her family was in. It has been her passion to make a positive difference in the lives of others with ME.
“I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room, or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post exertional malaise.
ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossible. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability, it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.
From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. I started a support group on Facebook in November of 2012 and over the years saw the dire need of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.
Why did I co-found The ME CFS Foundation South Africa? I realised something had to be done and co-founded The ME CFS Foundation South Africa. I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from the bed. I always have to religiously stick to my resting schedule and there are still days where I am too ill to do anything. Fortunately, there are 3 other co-directors. Each person reached makes all the hard work and sacrifice more than worth it.”
~ Retha Viviers (from ME CFS Foundation South Africa’s website)
Here is Retha talking about how she lives with Myalgic Encephalomyelitis in a short film about life with Myalgic Encephalomyelitis (ME)
Retha has worked with determination and dedication to help people with ME in South Africa by creating awareness and giving physical and emotional support. She and her foundation go above and beyond to assist patients in need with the following medication, food and basic necessities, visits to health care practitioners, airtime, and data (as many patients are housebound and have no other means of communication). All assistance is completely resource dependent. The foundation receives no government assistance and is completely dependent on donations.
The ME CFS Foundation South Africa’s aim is to transform lives and advocate for appropriate healthcare and dignity for people living with ME. ‘The ME CFS Foundation South Africa is the first entity of its kind in South Africa (and Africa) founded in response to a devastating multi system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. If you’d like to know more about The ME CFS Foundation South Africa, please visit their website www.mecfssa.org
At the start of ME Awareness Month we were saddened to hear that you are seriously unwell Retha. We hope you know that we are thinking of you every day.
We are grateful for all that you do for people with Myalgic Encephalomyelitis (ME) in South Africa, and for your ME education and awareness raising which has reached all corners of the globe.