The answer to the question “who am I?” isn’t as straightforward as you might think. For some people, a health condition can change all aspects of their lives and the way they see themselves. It can leave them struggling to do the things they once enjoyed or even to get through the day. It can have a profound impact on their self-esteem and may result in major lifestyle changes. It can also make family and friends feel confused and sometimes unsupportive, especially if they don’t understand the illness.
ME is a complex chronic disease and can affect all body systems. The cause is not known, but some studies suggest a genetic predisposition and others indicate it could be triggered by infections. People with ME experience relapses and a decline in functioning on a daily basis. The hallmark symptom is post-exertional malaise (PEM), a severe worsening of symptoms after physical, cognitive or sensory exertion.
Despite a lack of a diagnostic biological marker and the ongoing controversy around whether ME is a single clinical entity or several overlapping illnesses, research in ME is progressing. ME is the most common unexplained chronic disease in the developed world and it’s estimated that up to a million people in the US and millions more worldwide are living with unrecognised ME.
In order to be diagnosed with ME/CFS, the person must have a significant reduction in activity that lasts for more than 6 months and is accompanied by at least 2 of the following: fatigue that is not explained by another medical condition, sleep disturbance, unrefreshing or disrupted quality of sleep, or cognitive difficulties (also known as ‘brain fog’). It’s important to note that ME/CFS is not a mental illness or depression and it doesn’t have any connection with a person’s personality or mood.
It is recommended that anyone with suspected ME/CFS keeps a diary of their symptoms and visits a GP. This will help them to get a diagnosis more quickly. The GP can then refer to a specialist if required and further blood tests can be done if necessary to identify other conditions that might be causing the symptoms. Some people with ME/CFS have other long-term conditions such as rheumatoid arthritis, heart disease or cancer and it’s important that these are identified. The sooner a person is diagnosed, the earlier they can start getting the support they need.