In 2005 a young woman named Sophia Mirza became the first person in the UK whose death was directly attributed to complications of ME. Her death attracted a lot of media attention as her family and some ME advocacy groups attributed it to inappropriate treatment. Mirza’s medical team believed that she was suffering from a mental disorder and that the physical symptoms she experienced had a psychosomathic cause. According to her family, this made her condition worse and ultimately led to her death.
Even though ME received a lot of media attention following Mirza’s death in 2005, a recent survey reveals that the UK public is largely unfamiliar with this potentially fatal condition. Many people have never heard of it, while only a minority knew what ME stands for, its main symptoms, treatment options, etc. ME advocacy groups therefore emphasise the need for more awareness raising campaigns. By increasing the public awareness of the condition and the suffering it causes, ME patients will not only feel less stigmatised but they are also more likely to get proper treatment.
Unfortunately, the condition continues to be surrounded by controversy, especially when it comes to severity of its symptoms and their origin. To make things worse, there is no agreement within the medical community about virtually anything as some health experts continue to view ME as a psychosomathic or mental condition. As a result, they recommend psychiatric treatment which has been shown very dangerous and in case of Sophia Mirza, fatal.
The medical community can’t even agree on how to call ME. In addition to myalgic encephalomyelitis or ME, the condition is often also referred to as chronic fatigue syndrome or CFS. The latter is strongly opposed by both the patients and a growing part of the medical community because it suggests that it is not ‘real’ medical condition. And as long as it is not perceived and recognised as such, ME patients will face a number of obstacles in accessing health care and social security.