As well as being in Unrest Retha was also in the Carte Blanche piece: https://www.youtube.com/watch?v=oOk8SrZ-ufU
Second part of the interview. https://www.afrika-news.com/part-2-interview-retha-viviers-founder-cfs-foundation/
Retha Viviers on living with ME https://www.youtube.com/watch?v=LBowBrHyEtk @Retha Viviers edit: re trishes comment below I had the same problems and found a couple of Rethas other videos but they appear to use the same graphics.
I have just watched this, or rather listened to it. It is a 6 minute video in which you hear the voice of Retha Viviers talking about what her life is like living with ME, including the need to be able to rest when she needs to and the effects of brain fog both on what she can do and her sense of self worth. I thought the spoken part was very good. But after about a minute of watching the fast flickering images of pictures being drawn on the screen I had to close my eyes. For the rest of the 6 minutes my eyes went on flickering horribly. Not a nice experience. And then there was piano music going on as well at the same time as the speech. For a healthy person, it's probably no problem coping with these multiple sensory inputs, and I guess the video is designed to educate healthy people, so it's probably fine, but for pwME like me, it's really problematic. Edit - I've just realised @Retha Viviers is a member of this forum. I hope you don't feel too bad about my comment. As I said, I think the spoken part is very good, and for healthy people the whole thing is probably fine.
Post copied from Possibility of ME or PVFS after COVID-19, Long Covid 'Long Covid is a post-viral fatigue syndrome also seen after swine and bird flu' https://www.capetalk.co.za/articles...e-syndrome-also-seen-after-swine-and-bird-flu eta: there are several threads on South Africa, click on tag 'south africa'.
Do you think you have Chronic Fatigue Syndrome? Here's what you need to do There's an entire podcast with a South African doctor about ME/CFS, which I unfortunately can't listen to right now due to PEM. But it looks good. "Pippa Hudson talks to Cape Town medical doctor Elizabeth Murray, who specialises in the management of post-viral fatigue syndromes. She says decades after it was described as a syndrome, people suffering from ME or CFS continue to struggle to have their condition taken seriously even now. I only know about it because I got it, no teaching in medical school. Patients are told to go to a psychiatrist or even worse, they are told they are malingering. Dr Elizabeth Murray, Medical Practitioner Why do many doctors seem unwilling to buy into the diagnosis? Doctors don't like to say 'I don't know', and we don't know a lot about it. But we do know how to manage it. Dr Elizabeth Murray, Medical Practitioner" https://www.capetalk.co.za/articles...c-fatigue-syndrome-here-s-what-you-need-to-do
An article about Long Covid in South Africa (first posted about here) Covid-19: Clearer picture of long Covid slowly emerging There's some good commentary from Professor Jonny Peter, Head of the Division of Allergology and Clinical Immunology at the University of Cape Town and Groote Schuur Hospital, suggesting that patients with Long Covid may at least be believed: A study is mentioned, although the report so far just assessed people 1 month after a Covid-19 infection.There will be several more assessment over the next year. National Institute of Communicable Diseases - Covid-19 Special Public Health Surveillance bulletin They aren't measuring the incidence of PEM.
An informative radio interview about ME, with good, basic information for a general audience. Duration: 15 minutes. 702. The ME CFS Foundation South Africa founder and director Retha Viviers shines the spotlight on myalgic encephalomyelitis. Introduction: This week, East-London based singer and songwriter Nao revealed that she will not be going on tour to promote her upcoming album because she has chronic fatigue syndrome (CFS). What is chronic fatigue syndrome and what are its symptoms? Speaking to Refiloe Mpakanyane the ME CFS Foundation South Africa founder and director Retha Viviers says unfortunately chronic fatigue syndrome, gives the impression that the illness is about being tired and therefore prefers the term myalgic encephalomyelitis.
A research team from Stellenbosch University have been looking at blood clotting in Long Covid:Persistent clotting protein pathology in Long COVID/PASC is accompanied by increased levels of antiplasmin, 2021, Pretorius et al
Very sad news that Retha Viviers, founder of the South African ME/CFS Foundation, a staunch advocate for people with ME/CFS and a member of this forum has died. We have an In Memory thread for her here: Retha Viviers
MELCuSA (ME and Long Covid Unite South Africa, formerly the ME CFS Foundation South Africa) https://www.iol.co.za/weekend-argus...-be-sick-41ed931c-5082-4502-9f47-61c4a32d8ab0
Recording of 21-minute Cape Talk Radio interview this morning: Bettie Hough who lives with ME & Chair of ME & Long Covid Unite SA & Prof Resia Pretorius https://www.primediaplus.com/2024/0...erstanding-me-and-the-support-available-in-sa Some text extracts are also at the link
"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride" November 5, 2024 https://thesicktimes.org/2024/11/05...ness-visible-in-south-africa-with-sick-pride/ "SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge" Some extracts: "It is a savage irony that those of us with energy-limiting chronic illnesses who are far more functionally disabled than the conventional wheelchair user battle to be recognized as marginalized." -- "Those of us who are so severely disabled by ME and Long COVID that we are rarely able to leave our houses — or even our beds — suffer from an invisibility so total, most people are completely unaware of our existence" -- "Most energy-impaired people struggle to stand up and breathe at the same time, so we can’t parade — but we can lounge in style. We invited anyone suffering from energy-limiting conditions to meet at the beautiful Arderne Gardens in Cape Town." -- "We may not have strength in our bodies, but we certainly have strength in numbers… We don’t have to be passive, when we are this massive." --
DFA Gaslit and forgotten: The silent struggle of Long Covid sufferers whom the world has ignored Quote: This complex, multi system disorder has become a silent pandemic of its own, affecting millions worldwide, including South Africans. Yet, despite its significant impact, Long Covid remains under-recognised, misunderstood and under diagnosed. Sufferers speak of being ridiculed by friends about their symptoms, told they are faking it to get out of working, that it is purely psychological, that they are lazy, that they are mentally ill and many are left to battle it out in silence. However, the reality is that the lives of sufferers' shrink to a fraction of their former lives. "My capacity is less than 50% of what it was," says Mlindeni Gabela, the Long Covid Ambassador for MELCuSA (ME and Long COVID Unite South Africa).
