What is ME / CFS ?

Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) is a complex and debilitating disease that effects many parts of the body. ME is classified as a neurological disorder by the World Health Organisation. It is a long term illness that can impact a person’s daily functioning and quality of life.

Post-exertional Malaise (PEM), is the most disabling symptom that people with ME/CFS experience. The unrelenting profound fatigue is not relieved by resting. A simple action of cleaning one’s teeth maybe too much for someone with ME, showering is exhausting as is dressing oneself. Some people may be able to do a bit more and feel like doing the shopping or visiting a friend but the next day or the day after or even the day after that their body just crashes and they can’t move. They are back in bed. There are ways of learning to manage these times but it’s not easy accepting what is happening to you. Reaching out to a friend, our support group or talking to a professional can help you emotionally through these tough times.

Other symptoms

  • sleep dysfunction
  • swollen lymph nodes
  • sore throat, headaches
  • flu like symptoms
  • pain
  • cognitive difficulties and memory problems
  • heart palpitations
  • chemical sensitivities
  • noise and light sensitivities
  • dizziness
  • nausea
  • IBS
  • sensitivities to medications and food

Like multiple sclerosis, ME/CFS can relapse and remit, remain stable, or progress. There is a varying range of disability within the patient population. Many patients are housebound or bedbound — and many have been so for decades.

Some patients are able to live a partially normal life but may, for example, only be able to work by taking extensive bedrest afterwards. Many quite severely affected patients might be able to spend a brief period out of the house and can appear perfectly healthy for that short time before their symptoms build up and they are forced to rest. The most severely affected patients are confined to bed entirely, unable to care for themselves.

Cause

The cause of ME/CFS is unknown. There are a variety of factors that are being researched and discussed. The most prevalent being from a viral infection, however there are discussions about genetics, hormonal imbalances and trauma.

References

Presidents own lived experience,

What is ME/CFS? – Emerge Australia

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) – NHS (www.nhs.uk)

The ME CFS Foundation South Africa – ME/CFS Advocacy, Counselling (mecfssa.org)