Since becoming an M.E./C.F.S. advocate in 2014, I have had many conversations with people from outside the M.E./C.F.S community who are sure in their belief that people in less developed countries aren’t able to ‘give in’ to M.E./C.F.S. and have to ‘push through’. These people believe that M.E./C.F.S. is a developed-world illness that simply doesn’t exist or have the same impact in less developed continents.
How wrong they are.
M.E./C.F.S. does not discriminate in terms of age, race or gender. It can be found on every continent on the planet. Lack of research means we don’t fully understand why it is more prevalent in some areas than others but the fact remains, nowhere and no one is immune from the condition.
My friendship with the Founder of M.E./C.F.S. Foundation South Africa, Retha Viviers, began a couple of years ago. In my advocacy work with ME Foggy Dog, I wanted to highlight that M.E./C.F.S. is a global health crisis, so I sent a few emails. Retha is now a close friend ‘that I haven’t met yet’. We are Whatsapp buddies and speak daily via the voice message facility. I have heard first-hand about the efforts Retha and her small
team are making in South Africa and wider areas of the African continent.
Take a look at their website to see the amazing work they do to support M.E./C.F.S. patients and to raise awareness of the condition.
Retha has moderate/severe M.E./C.F.S. herself and has taken it upon herself to work for the patient community. Being in the same situation, I fully understand the frustration in seeing how much work needs to be done but simply not having the energy required. It requires immense self-discipline and energy management to make ensure that the work is completed as effectively as possible.
If you live in South Africa and can offer Retha some volunteering time, I know she would be incredibly grateful, she has a huge task on her hands.
As I mentioned in our e-learning training, statistics aren’t available as to the prevalence of M.E./C.F.S. in South Africa/Africa as the research simply isn’t being done. Retha has had meetings with the Government recently and hopefully, progress will be made in terms of establishing just how many M.E./C.F.S. patients there are.
Due to the rural nature of parts of the continent, it is incredibly difficult to reach out to the wider patient community. Retha contacts individual disability centres and tells them what M.E./C.F.S. is to see if they have any patients meeting the key characteristics. The majority of staff in these disability centres do not know anything about M.E./C.F.S.
This is why education is needed.
Retha has added a Stripy Lightbulb CIC link to her website in the hope that healthcare/education/business professionals in South Africa will sign up and complete the training. The politics and economics surrounding the condition may change but the core of M.E./C.F.S. (the patient experience) remains the same regardless of location.
Stripy Lightbulb’s training is relevant worldwide.
Take a look at www.stripylightbulb.com
Sally Callow
(Director and Founder of Stripy Lightbulb.com and Founder of ME Foggy Dog)
- Please note that Retha is constantly fundraising to be able to continue to support patients in the community. Please donate via her website if you are able to. Due to the exchange rate, GBP and USD are welcomed. Please donate particularly if you live outside of South Africa/Africa.
Thank you so much for your kind write-up Sally, I admire your work! May Stripy Lightbulb be a great success!