Some days, you simply don’t want to get out of bed. You could curl up for hours, continually falling back into an all-consuming sleep that doesn’t ever seem to want to release you. Sometimes, such extreme exhaustion is the result of stress, depression, jet lag, intense activity, or not getting enough consistent sleep. When, however, are so many days spent feeling a debilitating sense of fatigue, a sign of a more concerning health issue?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness that affects 2.5 million Americans. It leaves its patients feeling stripped of their ability to accomplish daily functions, and in some cases, it confines them to bed. If you are experiencing regular, debilitating periods of exhaustion that are disrupting your life, with seemingly no lifestyle or other underlying health conditions that might trigger your symptoms, it might be time to speak with your doctor.
What is ME/CFS?
Also known as systemic exertion intolerance disease (SEID), chronic fatigue immunity deficiency syndrome (CFIDS), and post-viral fatigue syndrome (PVFS), ME/CFS is a multi-system, chronic disease characterized by feelings of extreme fatigue that sometimes worsen with physical or mental activity, but don’t improve with rest or sleep. Individuals living with ME/CFS are often unable to perform daily tasks, including working, going to school, caring for their family, socializing, and even performing personal hygiene tasks. At least 25 percent of ME/CFS sufferers become bed or house-bound for long periods. Some individuals who develop ME/CFS suffer for years, and in some cases, it becomes a severe disability
The primary symptom of ME/CFS—the extreme exhaustion, is known as post-exertional malaise (PEM). Other symptoms can include:
- Unrefreshing sleep and other sleep problems
- Difficulty thinking and concentrating
- Memory loss
- Muscle or joint pain
- Sinus and nasal problems, including swollen glands and sore throat
- Light sensitivity and chills
- Abdominal pain, bloating, and nausea
- Enlarged lymph nodes in the neck or armpits
For some, standing upright can exacerbate ME/CFS symptoms.
What Causes ME/CFS?
The cause of ME/CFS is currently unknown. Some health care experts and scientists believe a combination of factors might trigger the condition. They believe such triggers might include psychological stress and viral infection. While no one virus has been definitively linked to ME/CFS, those studied for a relational effect include:
- Epstein-Barr virus (EBV)
- Human herpesvirus 6
- Ross River virus (RRV)
- Rubella virus
Bacterial infections also studied concerning ME/CFS include coxiella burnetii and mycoplasma pneumoniae.
There is currently no diagnostic test or FDA-approved treatment of ME/CFS. Since there is no definitive known cause of the disorder, and because many other conditions can trigger extreme fatigue, such as infections or psychological disorders, ME/CFS can be challenging to diagnose.
For some patients, ME/CFS appears along with another condition, such as:
- Orthostatic intolerance
- Irritable bowel syndrome (IBS)
- Interstitial cystitis
- Temporomandibular joint (TMJ) disorder
- Chronic pelvic pain
- Multiple chemical sensitivity disorder
Who is at Risk of ME/CFS?
While anyone can develop the condition, it is most common among women in their 40s and 50s. The illness also affects children and adolescents.
When to Get Help
If you are experiencing extreme exhaustion lasting more than 24 hours after physical or mental exercise, talk to your doctor. They will be able to eliminate other possible causes of your symptoms and determine if you are suffering from ME/CFS. Together, you will create a treatment plan to help you adapt to your illness and continue living your fullest possible life.