WATCH: Do you know what ME is?
ROODEPOORT – Do you suffer from myalgic encephalomyelitis?
To promote awareness about an illness is not an easy task, but an even harder task is promoting awareness about an illness that many confuse with a lack of exercise and poor diet.
Many who suffer from myalgic encephalomyelitis (ME) might not get the answer from their doctor because, as Dr Charles Shephard, a medical adviser at the ME Association said, “People with ME go undiagnosed or misdiagnosed for long periods of time, often combined with harmful management advice, as is still the case.”
ME sufferer Retha Viviers, and cofounder of the ME CFS Foundation said ME, also referred to as chronic fatigue syndrome (CFS), is a neuro-immune disease that affects virtually every system in the body.
According to the foundation, 25 per cent of patients are bed- or housebound, 75 per cent are unable to work and only 5 per cent recover.
In the video below, Dr Jose Montoya, associate professor of medicine for infectious diseases and geographic medicine, discusses ME/CFS:
Viviers’ condition progressed in 2009 and because of this, she could no longer continue her successful career. Today she can function for about two or three hours at a time before she needs to rest for an hour or two. Viviers explained that it is like an old cellphone with a very poor battery which needs to be charged fairly often, and while it is charging it cannot be used.
“The illness ruined us financially. After all our funds were used to live and also try various treatments from people who claimed they had a cure, we had to sell our house in order to live from the proceeds,” Viviers said.
In the video below, it is explained what it is like to have ME:
Realising the need for awareness, Viviers now aims to help others facing the same challenges through the establishment of the first South African ME CFS Foundation.
“Compounding the challenges faced by people with ME, most doctors are either not familiar with the disease or they have outdated information that suggested the disease was psychosomatic. Recent studies have identified clear abnormalities in people with ME, but not all doctors have kept up to date. The foundation is working to promote awareness among the medical community so that people with ME can be diagnosed and treated.”
This festive season, the foundation is in need of food and basic necessities, medication and high dose supplements for symptom management.
Details: www.mecfssa.org; info@mecfssa.org
