ME/CFS is a complex and disabling illness affecting all body systems. It is a neurological disease according to the World Health Organisation and it affects people of all ages, races, sexes, social economic backgrounds and educational levels. It is believed to be triggered by infections, but it can also appear spontaneously. Many people with ME experience severe symptoms which leave them housebound or bedridden, and most are unable to work.
ME may be difficult to diagnose because it is not a physical illness and blood tests often do not show anything abnormal. It is estimated that 90% of people with ME will spend years trying to get a diagnosis, and some are misdiagnosed or told they do not have the illness at all.
The cause of ME/CFS is not yet known but there are connections to genes, the central nervous system and the immune system and researchers are working on diagnostic tests and treatments. People who have ME/CFS usually recover from an episode of ME by resting and limiting activity but the illness can return again at any time in the form of a ‘relapse’.
During an interview, you are likely to be asked the question “How would you describe yourself?” The answer to this will be one of the most important things you can tell your prospective employer about yourself, and it is not something you should take lightly.
You need to be able to articulate your ME in a way that is eloquent and clear. There is no right or wrong answer but the key is to be able to explain your symptoms and how they affect you, so that your prospective employer can understand your ME.
A good starting point is to explain that your ME manifests in the following ways:
fatigue that does not improve with rest or sleep.
a feeling of weakness or tiredness that persists beyond the level expected after exercise, mental exertion or social activity.
post-exertional malaise (PEM) – a global increase in ME symptoms that can be triggered by activities of different intensities, and lasts for hours, days or weeks.
cognitive difficulties (brain fog), which can include poor memory, slowed responses and difficulty concentrating.
a range of other symptoms including pain in the muscles, joints, glands or digestive system, headaches and eye problems, sensitivity to light, sound, temperature and touch.
It is recommended that people with ME/CFS are referred to an ME/CFS specialist team for assessment and care. These teams should consist of healthcare professionals with training and experience in ME/CFS, and a holistic approach to assessment and care. They should also include physiotherapists, occupational therapists, dietitians and clinical or counselling psychologists. The ME/CFS specialist team will assess the person, develop a care and support plan and refer them to other healthcare professionals as required.