The ME CFS Foundation South Africa NPC
Imagine being hit with a disabling illness that destroys your life. An illness which literally takes out your body’s “batteries”, taking away most things we take for granted: working, exercising, socializing, playing with your children, traveling and many other activities.
However, this illness does not yet have a cure. This is the disease called Myalgic Encephalomyelitis, also referred to as Chronic Fatigue Syndrome (ME/CFS). Millions of people around the world are affected by this disabling illness; resulting in them disappearing from society and becoming part of The LIVING MISSING.
2. Who founded The ME CFS Foundation South Africa
Retha Viviers was officially diagnosed with ME/CFS during 2008. ME/CFS came at a huge cost to her family and herself. She had to stop working formally which caused a lot of financial challenges for her family. Being a spouse and a parent with ME/CFS is extremely challenging and causes a lot of guilt and missing out on family activities.
From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched her life. She 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. She has come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.
- Why was The ME CFS Foundation South Africa founded?
Retha realised something had to be done and founded The ME CFS Foundation South Africa NPO. She found a new purpose in life, one of helping others in the same or worse situation she’s in.”
- What is ME/CFS?
ME/CFS is a serious and life-changing condition associated with neurological, immunological and energy-metabolism impairment and is characterized by significant disability and a serious decline in functionality, it can be fatal.
ME/CFS is classified by the World Health Organisation also as a neurological illness.
Important to note: There is a big difference between being chronically fatigued and having serious illness ME/CFS.
5. Quality of life of ME/CFS patients compared to other very serious illnesses
ME/CFS has the lowest health-related quality-of-life score when compared to:
- heart disease,
- chronic renal failure and
- multiple sclerosis
- Aids (except the last 2 weeks before death
6. What does The ME CFS Foundation South Africa do?
- The ME CFS Foundation South Africa NPO is the ONLY organisation in South Africa representing the ME/CFS community. It aims to address the dire need of those suffering from this debilitating and devastating illness, and to put an end to the misconceptions surrounding the illness. Furthermore, The ME CFS Foundation South Africa is committed to improving the quality of life of all people affected by ME/CFS in South Africa and the rest of the continent by addressing the needs of sufferers, educating the public, medical students, health care practitioners, governments and advocating for their rights. The Foundation has only reached the tip of the iceberg in SOUTH AFRICA; it will take a substantial effort to reach possibly thousands more patients in SA.
- Our VISION is to transform the lives of all ME/CFS patients in South Africa (& the rest of Africa) by receiving appropriate health care and be treated with dignity.
- The ME CFS Foundation South Africa is committed to improving the quality of life of all people affected byME/CFS in South Africa and the rest of the continent by addressing the needs of sufferers, educating the public, medical students, health care practitioners, governments and advocating for their rights.
- The main objectives of the Foundation are:* The provision of healthcare services to poor and needy persons with ME/CFS across all races, sexes and socioeconomic classes; and
* The care or counselling of terminally ill persons or persons with severe physical disability due to ME/CFS, and the counselling of their families in this regard.
These objectives are generally achieved through the following core activities:
- Provide healthcare and counselling services for those patients who cannot afford them;
- Advocate for the rights and interests of persons living with ME/CFS.
- Growing the network of health care practitioners with ME/CFS knowledge
- Raising awareness/advocating/informing (educating) - distribute awareness materials, hold talks at clinics/hospitals
- Emotional support for patients and their families
- Assistance with claims for ''disability'' claims, probably going to the Equality court - but first speak to insurers/medical aid companies, Access to Work from home
- Provision of Supplements to patients to improve their QUALITY OF LIFE
- Access to and assistance with doctor visits and symptomatic treatments
- Assistance with shopping (i.e. someone either taking you or doing it on your behalf)
- Assistance with housing - e.g. improving current housing, help find suitable accommodation, making rooms soundproof
- Continue exposure of members' arts and crafts
- Provide food, basic necessities, visit patients
- Assistance with transport, whether it is for e.g. a scooter or someone who pick you up
- Support function