The ME CFS Foundation South Africa

About Us

The ME CFS Foundation South Africa is the first entity of its kind in Africa

Why we exist

The ME CFS Foundation South Africa: first of its kind in South Africa

The ME CFS Foundation South Africa is the first entity of its kind in South Africa (and Africa) founded in response to a devastating multi system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. This serious (often severe and even fatal) illness is called Myalgic Encephalomyelitis. It is also referred to as Chronic Fatigue Syndrome, hence the abbreviation ME/CFS.

The ME CFS Foundation South Africa supports people with ME/CFS and co-morbid conditions which often occur with ME/CFS such as Fibromyalgia, POTS (Postural Orthostatic Tachycardia Syndrome,) etc.

We also provide support for people suffering from Long Covid.

 

Beyond research

The ME CFS Foundation South Africa is the first entity in South Africa (and Africa) was founded at the end of 2015 and obtained Public Benefit Organisation status early 2016.

The Foundation is one of the first organisations that goes beyond awareness and research campaigns. We support all of these and take part in many, however, we also know and understand that ME/CFS patients urgently need physical, emotional, social, medical as well as financial support. In their everyday lives, patients are constantly reminded that they are living with an incurable and incapacitating disease, are discriminated against because of this disease, receive inadequate therapies and receive no government assistance in South Africa.

Regrettably, ME/CFS is often referred to as “the orphan illness”, as so little research has been undertaken in relation to its nature and effects.

To make matters worse, the latest research is not taught at universities/nursing colleges which further pushes ME/CFS into obscurity despite its seriousness. Fortunately, ongoing substantial research has started giving hope to the millions of sufferers around the world.

It is believed that THOUSANDS of patients across South Africa still need to be diagnosed and given access to some form of basic treatment or advice on how to live with this illness and the Foundation will be there to do just that.

VISION

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.

MISSION

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.

OBJECTIVES

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.
  • Note: these objectives depend heavily on available funds.

These objectives are generally achieved through the following core activities:

  • To advocate for the provision of appropriate  healthcare services
  • To provide counselling services for those patients who cannot afford them;
  • To raise awareness of ME/CFS; and
  • To advocate for the rights and interests of persons living with ME/CFS.

SERVICES

AWARENESS

We raise awareness among healthcare professionals. We need to expand the existing network of medical practitioners to enable diagnosis and provide basic symptomatic treatment.

EDUCATION

We run public awareness campaigns and projects to educate people about ME/CFS and the challenges faced by ME/CFS patients, both diagnosed and undiagnosed as well as their families.

We educate health care practitioners on ME/CFS and the latest available information on Long Covid.

SUPPORT

Physical: Assist with basic necessities such as food, clothing, airtime, etc.

Emotional: We counsel patients, loved ones and carers. We have a closed online support group – email info@mecfssa.org

Medical: Provision of health care and symptomatic treatment.

We rely on funds to provide physical and medical support.

RESOURCES

We develop and keep updated, training materials based on cutting-edge scientific research on ME/CFS for use in the public and private health care sectors for the benefit of patients – we get our information mostly from overseas research institutions and ME/CFS organisations.

Being a repository of knowledge and resources for the benefit of patients, their families and carers, the medical profession and other interested parties. 

Lately we also provide up to date information on Long Covid.

ADVOCACY

We use social media and other platforms to advocate for the rights of patients with ME/CFS.

NETWORKING

Building networks and forming alliances with health care practitioners, ME/CFS communities, ME/CFS organisations globally, the government, research institutions, etc.

We have started connecting with patients in other African countries.

BOARD MEMBERS

The ME/CFS Foundation South Africa is proud to present its Board Members.

The Foundation is grateful for these members steering the important work of the Foundation in the ME/CFS field in South Africa.

Click on each member’s photo to read their complete bio and for their contact details.

Retha Viviers: Founder

Clarinda Viviers: Co-Founder

Malebo Ramoroka

Dr Alexia van der Velde

Anri Human