When you’re asked to describe yourself in a way that will be read by others, from your college application essay to job interview responses, the words you choose are important. You want to choose adjectives that are specific, rather than overused. And you should avoid certain phrases that are often used in an attempt to sound more professional — “meticulous,” for example, is not a trait you want to associate with yourself.
Myalgic encephalomyelitis, also known as ME and chronic fatigue syndrome (CFS), is a complex neuroimmune disorder that affects people of all ages and backgrounds, from a wide range of socioeconomic levels. It’s a disabling illness that can cause severe symptoms and leaves many patients housebound or bedridden. It can present suddenly, or it may come on more slowly over time. There’s no cure and no single test to diagnose it, and it can be confused with other conditions, such as fibromyalgia or Lyme disease.
As the UK’s ME charity, Action for ME, points out, “There are currently no reliable statistics on the number of people living with ME/CFS but it is estimated that up to 250,000 people in the country have the condition.” Boothby O’Neill was among them. She was unable to go to work, study or socialise, and spent most of her time at home in bed with her condition. She was diagnosed with ME at the age of 17, following a viral infection, and struggled to maintain any normality.
ME/CFS has a variety of symptoms, including profound fatigue and cognitive difficulties — similar to those experienced by people with fibromyalgia and Lyme disease. Currently, there is no diagnostic test or cure, but some of its most debilitating symptoms can be managed using techniques like “pacing,” which involves matching activities to the patient’s limited amount of energy; sleep aids; and medication for pain, anxiety and depression.
People with ME can sometimes be misunderstood by friends, family and health care professionals. They are at higher risk of experiencing discrimination, and they can be viewed as lazy or not trying hard enough. The lack of understanding means ME/CFS can have a significant impact on patients’ lives, with some being forced to leave their jobs and become more isolated.
To help combat this, Solve ME has compiled a list of resources for ME patients, their families and health care professionals. These organizations can help patients and caregivers find peer support, access financial assistance, obtain assistive devices and get the appropriate accommodations they need in school and in the workplace. They can also provide information on entitlements to welfare benefits and signpost to local groups that offer practical advice and advocacy for ME/CFS. We encourage everyone to check out these resources, and share them widely with their networks. The more awareness we can raise, the closer we’ll get to a cure.