The answer to the question “who am I?” is far more complex than a label such as accountant, father, heterosexual man or crossword enthusiast. While these can give you a snapshot, they don’t capture the full picture of a person’s unique personality, strengths and weaknesses.
For people with ME/CFS, the question is even more complicated. The illness can cause serious and lasting health problems, and it can also be difficult to access adequate healthcare and support. Campaigners have launched a new initiative to highlight the problems facing patients and push for reform. They want to see a local service for ME/CFS in every area of the country, as well as regional specialist centres for the most severe cases.
There is no test for ME/CFS, so doctors need to base a diagnosis on an in-depth assessment of a person’s symptoms and medical history. They must also rule out other conditions that can cause similar symptoms. The most important symptom is debilitating fatigue that is not explained by other illnesses and does not improve after rest.
Those with ME/CFS often have to wait years for a correct diagnosis, and many do not get one at all. It is thought up to 90 per cent of those who are ill with ME/CFS in the UK have not been diagnosed, or have been misdiagnosed.
It is thought to be triggered by viral infections, but researchers do not know the cause of the disease. A recent study using cutting-edge brain scanning techniques may help explain why some people develop ME/CFS, and if it is caused by inflammation of the brain.
ME is a relapsing-remitting condition, and a person’s symptoms can come and go from day to day, week to week or month to month. Some people have very mild symptoms, while others can become very sick, with post-exertional malaise, unrefreshing sleep, cognitive impairment and orthostatic intolerance (abnormal blood pressure when changing positions).
The charity Action for ME said 250,000 people in the UK are living with ME, but added that this was likely to be a significant underestimate. The symptoms of the illness include feeling exhausted all the time, difficulty thinking and concentrating and experiencing frequent bouts of fatigue – sometimes known as “brain fog”.
People with ME and their families need to feel supported, so that they can do their best for themselves. They need to be able to find a doctor who is willing to take the time to investigate and listen to their health concerns, and who will offer them appropriate care. We need to support the development of ME/CFS services, and ensure that there are enough clinically led ME/CFS specialist posts in the NHS to meet demand. This will require a major overhaul of the NHS and an investment in ME/CFS research.