When a job interviewer or a college application asks “How would you describe yourself?” what they really want to know is whether your personality, values and goals align with the company’s culture. This question also helps them decide if your education, skills and experiences are suitable for the role.
For many people with ME, however, the answer to this question is more complicated. ME is a debilitating illness and can cause symptoms that make it hard to function in daily life. During the ME/CFS relapses, these symptoms can be even more severe. People with ME are a diverse group and may come from any social, economic or ethnic background.
ME/CFS can affect the whole person – physically, emotionally, mentally and socially. It can cause pain, a lack of energy, difficulty with thinking or concentration and memory, bloating and constipation, difficulty with regulating body temperature and sleep disturbances. It can also lead to depression or anxiety. People with ME often cannot work full time and some are housebound or bedbound on their worst days. This can be especially difficult for parents whose children are affected.
There is no single laboratory test for ME/CFS and it is usually diagnosed on the basis of a medical history, a pattern of symptoms and the exclusion of other diseases that can have similar symptoms. Because of this, it is very common for people with ME to go years before being correctly diagnosed.
Research is focusing on genetics, infections, the immune system and hormone imbalances as potential causes of ME. The world’s largest ME study, DecodeME, is looking at thousands of DNA samples from people with ME to find clues as to its cause.
It is not known what triggers ME and it can appear at any age. It can occur suddenly, most commonly following an infection; or gradually. Some people can develop ME after a physical trauma such as surgery, a car accident or radiotherapy; or after a major hormonal shift such as pregnancy or menopause. The illness can be exacerbated by stress, poor nutrition, alcohol and certain medications.
There are many treatments for ME but it is not yet clear what works best. It is important to find a treatment that will not worsen the symptoms. Some people with ME have benefited from cognitive behaviour therapy (CBT) and graded exercise therapy (GET), but these treatments are controversial in the ME community because they assume that ME patients are afraid to exert themselves and have therefore become “de-conditioned.”
It is essential for ME/CFS sufferers to be active in raising awareness of the condition and educating others about what it entails. For more information, visit ME Association’s website.