We are excited to announce our newest Social Media Ambassador, Clarinda Viviers, from South Africa! A social media ambassador is a volunteer who is knowledgeable, an enthusiastic supporter of the ME community and #MEAction, and has a strong social media presence. Each ambassador amplifies #MEAction’s social media efforts and share news with #MEAction’s social media teams to ensure we are hearing the community voice. We are excited that Clarinda will be able to share news from South Africa with us and that she will use her multiple platforms to share #MEAction news and updates!
Do you have a strong social media following, and support the goals of #MEAction? Join our Social Media Ambassador team.
Tell us a bit about yourself and the situation for people with ME in South Africa?
I am 27 year old South African woman; I previously studied to become an emergency care practitioner but due to poor health I couldn’t complete my studies. At the moment I am completing my 3rd year of a general Bachelor’s degree with a double major in Mathematics and Physiology.
I co-founded The ME/CFS Foundation South Africa along with my mother, Retha Viviers. Currently there are no disability benefits from the government for myalgic encephalomyelitis (ME) patients. Even the insurance companies do their absolute best not to pay out policies taken out prior to ME diagnosis. There are a few health care practitioners with solid knowledge of ME, but they are by far in the minority. Our Foundation is the only one of its kind in South Africa. We still have to reach literally millions of people in South Africa. Fundraising is a complete nightmare as we are up against AIDS, tuberculosis, a very high unemployment rate, millions of people living in poverty, etc. Many ME patients also live in poverty and isolation and we are constantly trying to raise awareness for the ME cause.
What made you want to get involved with #MEAction advocacy, specifically working as a social media ambassador?
We have been in “alignment” with #MEAction since the #MillionsMissing event in September 2016. My mother, Retha Viviers, is featured in the Unrest documentary – in a recording of a meeting held by #MEAction. I am in awe of the success #MEAction has achieved and firmly believe we need to work together in any way possible. I agree with #MEAction’s viewpoint and think we can help the South African community even more by me being a social media ambassador. It is so important to share updates with the ME sufferers in South Africa, they have to see how much is being done by #MEAction. Hope is the one thing we all need at this stage. I also believe that being a social media ambassador for #MEAction will broaden our access to the international ME community.
We believe that social media is important as a platform for building advocacy and community. How do you envision using social media to benefit our community?
I agree completely, as many ME patients are bed and or house bound, social media is a great way to reach patients. However, I also believe that non-patients can be reached and this can be extremely beneficial to the ME community in South Africa and the rest of the world. We have to be the voice of the ME community and social media is a perfect way to reach this objective. It is important for patients to see that they haven’t been forgotten and that we are trying to bring about change. Doctors and medical professionals peruse social media platforms, as well, and if they can see our posts and it intrigues them, it will prompt them to investigate and educate themselves on ME, which will greatly benefit ME patients in SA. ME isn’t taught about at university and we need to cover all our bases and try to reach as many people as possible.
