Afrika News.com: "Interview with Retha Viviers, founder of ME/CFS foundation S.A"

Andy · Jan 22, 2018

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/

Sly Saint · Jan 23, 2018

As well as being in Unrest Retha was also in the Carte Blanche piece:

Andy · Jan 28, 2018

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/

Sly Saint · Dec 8, 2018

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.

Trish · Dec 8, 2018

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.

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Afrika News.com: "Interview with Retha Viviers, founder of ME/CFS foundation S.A"

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Afrika News.com: "Interview with Retha Viviers, founder of ME/CFS foundation S.A"

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Sly Saint Senior Member (Voting Rights)

Andy Committee Member & Outreach

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