If you have chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME), you know that living with this debilitating condition isn’t easy. You have to make major lifestyle changes, and your extreme exhaustion can make it difficult to socialize or maintain a job. Despite these challenges, there are ways to help you cope and improve your health.
ME is an illness that’s triggered by an infection, most commonly glandular fever or Epstein-Barr virus (EBV). Some researchers believe that herpes viruses, enteroviruses and Ross River virus may also trigger the disease. Unlike some other illnesses, there is no laboratory test to diagnose ME/CFS. Instead, doctors must rule out other conditions that have similar symptoms. To help them do this, patients must carefully track their symptoms over time.
The National Academy of Medicine has issued guidelines that describe the combination of symptoms that’s needed for a diagnosis. To get a diagnosis, you’ll need to experience any of these symptoms for six months or more: debilitating fatigue that’s not cured by rest; unrefreshing sleep; persistent or worsening cognitive problems; pain, dizziness, trouble with balance and/or coordination; periods of bloating, constipation or bowel movements that are more frequent than usual; and/or muscle or joint soreness and difficulty regulating body temperature.
Getting the right diagnosis is important because ME/CFS can lead to many different complications and can be mistaken for other illnesses such as depression, anxiety or bipolar disorder. Often, people are not believed by their healthcare providers and are not able to get the help they need. Fortunately, there are organizations that can help you find the best treatments and support for you and your family.
CFIDS/ME & FM Association of Massachusetts
This 501(c)3 organization exists to meet the needs of people with ME/CFS or CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) and their families. They offer informational materials, education and a variety of activities. They host the annual CFIDS Awareness Conference in Boston, as well as other educational and outreach events throughout the year.
The Sundance award-winning documentary UNREST explores the lives of people with ME/CFS and their struggles to obtain quality care and services around the world. It features the stories of eight people who are battling this illness.
During the game of “Who am I?”, players place a name of a famous person or thing on their foreheads. Then, one player at a time, revolving in a circle, asks questions about the name to figure out who it is. The first player to guess correctly wins the game. To play this game, all players must be honest with each other. A dishonest answer can skew the results of an entire round. It’s also a good idea to share key personal information such as recent life changes, other illnesses and any prescription medications or supplements you take on a regular basis. Then, you can provide your healthcare team with the most accurate and complete information possible.