If you have ever been asked to describe yourself, it can be difficult to come up with a single word or phrase that captures your essence. This is especially true if you live with an illness like ME or CFS that has a profound impact on your day to day life and can make it challenging to get the support and care that you need.
ME, also known as myalgic encephalomyelitis or chronic fatigue syndrome, is a complex, neuroimmunological disease that can be triggered by infection and causes a range of symptoms in multiple body systems. It can range from mild to severe and leaves people unable to work or maintain their daily routines. There is no cure for ME, and most patients continue to suffer for their entire lives.
There is no one test to diagnose ME, which means that doctors must rule out other conditions that can have similar symptoms in order to make a diagnosis. Many patients also experience cognitive dysfunction, such as trouble thinking or concentration, and may experience pain, difficulty regulating temperature, unrefreshing sleep, periods of bloating and constipation and issues with bowel function.
Although there is no cure for ME/CFS, it can be treated with a combination of therapies and medications that address specific symptoms such as cognitive behavioral therapy, antidepressants, sleep aids and pain relief. The most effective treatment approaches are tailored to the individual and are often best when based on evidence-based practice.
The CDC estimates that between 836,000 and 2.5 million Americans suffer from ME/CFS, with women and people from racial or ethnic minority groups diagnosed more frequently than others. The illness can cause long-term disability, and it is estimated to cost the economy about $17 to $24 billion per year in lost wages and medical bills.
People living with ME/CFS can face a range of challenges, including the lack of understanding and stigma. This can lead to disbelief or discrimination from friends, family, health and social care professionals and employers. It can also prevent access to welfare benefits and can make it harder to find employment. In addition, many patients struggle to get the necessary help from the NHS.
There are no approved treatments to treat the underlying cause of ME/CFS, but research into this is ongoing. A new study called DecodeME is looking for genetic markers of ME, and if a link can be found it could provide the clues needed to develop future therapies. A similar project, the UK ME/CFS Genetics Network, is working to understand what triggers ME and how it can be prevented. It is hoped that this information will reduce the number of cases of ME and other diseases linked to ME, such as fibromyalgia and rheumatoid arthritis.