News from South Africa

Andy

Andy

Senior Member (Voting rights)
A thread for news from South Africa

In an attempt to understand and raise awareness about the situation of ME/CFS patients in our continent, our Afrika News team contacted the director of ME/CFS foundation South Africa, Mrs Retha Viviers. In this part of the interview, Mrs Viviers will thoroughly explain what ME/Chronic Fatigue syndrome is and she will also talk to us about her foundation.

Retha, please tell us more about yourself and your ME/CFS foundation S.A?
Personally, ME/CFS came at a big cost to my family and me, but I have also gained in unexpected ways.

From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was going to be the main breadwinner and my husband the house husband building websites as a hobby. My husband is an engineer, but by the time my health deteriorated to the point of not being able to work, it was too late for him to get back into the industry as he was almost 60. Month to month financial commitments are a complete nightmare. We still have one child at school and she is very talented, but having a sick mom and the financial and other consequences are very hard on her as well. It breaks my heart as a parent.

I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. I still get PEM (Post-exertional malaise) /PENE (Post Exertional Neuroimmune Exhaustion) if I do too much.

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.
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https://www.afrika-news.com/interview-cfs-foundation-founder/
 
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Second part of the interview.
In our second part of the interview with Retha Viviers, she will tell us about what is currently being done to alleviate the situation of ME/CFS sufferers. She will also talk to us about the impact of Jennifer Brea’s Documentary “Unrest” on South African patients.

What is being currently done to mitigate the situation medically in South Africa and in the continent?
To the best of my knowledge no plan is in place to mitigate the situation in South Africa and I really don’t think in the rest of the continent either.

The Major problem is that symptoms overlap with other illnesses, which first need to be eliminated e.g. hormonal imbalances, thyroid problems, adrenal fatigue, depression, fibromyalgia, iron and other deficiencies. Then an extended questionnaire according to certain criteria guidelines needs to be completed for diagnosis purposes. Specific abnormalities can be tested for e.g. immune function and mitochondria. But these tests are very expensive. Also most general blood tests are negative. As there is no specific blood or any other test to show a patient has ME/CFS, most are either misdiagnosed or undiagnosed.

I personally believe illnesses such as African sleeping illness can have cases where it is actually ME/CFS. The same might apply for other illnesses where blood haven’t been drawn.
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https://www.afrika-news.com/part-2-interview-retha-viviers-founder-cfs-foundation/
 
Retha Viviers on living with ME



@Retha Viviers


edit: re trishes comment below
Trish said:
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.
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I had the same problems and found a couple of Rethas other videos but they appear to use the same graphics.
 
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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'
Pippa chats to general practitioner Dr Jason MacArthur who is also the Medical Director of Ingress Healthcare about the condition that has become known as 'long Covid.'

It appears to fall into a category of diseases that have been known about for a long time called post-viral fatigue syndrome.

Dr Jason McArthur, Medical Director - Ingress Healthcare
He says this has been recorded previously in cases of swine flu and bird flu, where the virus itself passes, but the condition continues to affect the patient.

We have seen this with Covid, and it is when the signs and symptoms last longer than the typical recovery period, and the patient can show signs typical of covid itself..or post-viral fatigue symptoms like ME.
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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'.
 
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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:
“There is a huge burden of post-acute complications and then there is a smaller group, where people experience very prolonged symptoms even after six months. In these patients, SARS-CoV-2 has triggered a post-viral fatigue syndrome,” says Peter.
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There are two main theories about persistent and long-term symptoms, according to Peter.

The first is that there may be a reservoir of virus left somewhere in the body, where the immune system can’t detect it, even though the virus is undetectable with a test. A part of the virus is left causing damage, even though it can’t replicate and spread in the body anymore.

The second is that there is some form of misdirected immune response, such as auto-antibodies. These drive ongoing inflammation, in either one organ, or it could be systemic.
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We have no reason to believe that long Covid may be different in South Africa than elsewhere in the world,” he adds.

How many people in South Africa are suffering from long Covid is unclear. When reporting the data and mentioning that people have recovered from SARS-CoV-2, is not taking cognisance of the fact many have not actually recovered, says Peter. What we are not reporting is that many people have ongoing symptoms.

“It is a huge burden on the health system and in some way, it can even be a much longer, sustained one than the acute illness surges we experienced.
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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.
media article said:
Dr Murray Dryden from the Division of Public Health Surveillance and Response at the National Institute for Communicable Diseases (NICD), who led the study, says irrespective of the disease severity, whether severe or asymptomatic, any patient who becomes infected with SARS-CoV-2 can develop long Covid.
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National Institute of Communicable Diseases - Covid-19 Special Public Health Surveillance bulletin
NCID report said:
Currently, there is no published data on Long COVID in South Africa and Africa as a whole. As part of a multi-country study coordinated by the International Severe Acute Respiratory and emerging Infection Consortium (ISARIC), we established a prospective cohort of SARS-CoV-2 infected patients for serial follow-up after hospitalisation. The aim of this study was to determine the prevalence of and risk factors for Long COVID in South Africa.
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They aren't measuring the incidence of PEM.
 
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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.
 
MELCuSA (ME and Long Covid Unite South Africa, formerly the ME CFS Foundation South Africa)

Pyjama picnic for those with chronic illnesses will be sick

It’s been dubbed a “SICK Pride” parade where people with energylimiting chronic illness will converge in celebration as well as to raise awareness.


Themed “Pyjama Picnic”, SICK Pride will take place at the scenic and tranquil Arderne Gardens, Claremont, tomorrow, November 12, from 2–4pm.

The event is organised by SICK (Society for the Inclusion of Chronic Knowledge) and supported by MELCuSA (ME and Long Covid Unite South Africa, formerly the ME CFS Foundation South Africa) and endorsed by the World ME Alliance.
Co-founder Mlindeni Gabela said the goal was to make “invisible illnesses” visible in South Africa.
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https://www.iol.co.za/weekend-argus...-be-sick-41ed931c-5082-4502-9f47-61c4a32d8ab0
 
"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."
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"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"

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"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."

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"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."

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https://twitter.com/user/status/1880375518861881443
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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).
 
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