Association for Myalgic Encephalomyelitis

Living with Severe Form of ME

About 25% of ME patients have an extremely severe form of the condition. Besides being unable to live a normal life or even perform the simplest everyday activities, many of these people are unable to leave their home, with some even being bedridden. They don’t only suffer extreme fatigue, which is the main symptom of ME, but they also suffer a number of other extremely severe symptoms, some of which can even lead to death.

Symptoms of Severe ME

Symptoms suffered by patients with severe form of ME often include a whole spectrum of problems that literally make their lives an agony. Extremely severe fatigue is often accompanied by severe pain, inability to move/paralysis, inability to speak or/and even eat, extreme sensitivity to light and sound, gastrointestinal problems including incontinence, and sleep problems, to mention just a few. Symptoms of severe ME are often so extreme that the patient is unable to perform everyday activities or live a normal life.

People with severe form of ME are unable to go to work or school; what is more, they are often unable to leave their home or even get out of bed. They are also unable to have contacts with other people or live independently. As a result, people with severe ME usually depend on their loved ones who provide financial support and in most cases, care for them virtually 24/7.

The Need for Increased Awareness of ME, Especially in the Medical Community

ME awareness among the general public is low. Most people have never even heard about it, while those who did tend to underestimate its seriousness. What is more, the condition is misunderstood even by the medical community as many health experts refuse to acknowledge it as a physical illness. This clearly reveals the case of Sophia Mirza whose death is widely considered as the consequence of misunderstanding of ME and underestimating the risk and severity of potential complications. Mirza’s doctors refused to acknowledge physical symptoms of the condition and treated her for mental disorder. As a result, her health deteriorated rapidly and in 2005, she died from complications of the condition, becoming the first person in the UK whose death was directly attributed to ME. She was only 32 years old.