ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome is a serious, typically lifelong illness that can be caused by COVID, although it also has other causes such as mono. ME/CFS affects all racial groups equally, although people of color are less likely to be diagnosed. Up to half of people with Long COVID also have ME/CFS.
ME/CFS is a syndrome, meaning that doctors diagnose it based on the symptoms a person is experiencing. The main symptom of ME/CFS is post-exertional malaise (PEM). PEM is a severe worsening of symptoms following activity that can take days, weeks, or longer to recover from. If someone has Long COVID and experiences PEM, they also have ME/CFS.
For a person who is severely ill with ME/CFS, PEM can be triggered by very minor activity such as listening to music or taking a shower. People with severe ME/CFS are often unable to leave their homes–sometimes, they cannot even get out of bed. A person with milder ME/CFS may be able to work part-time at an office job, but struggle to do chores or spend time with friends. Up to one out of four people with ME/CFS are so sick that they are unable to leave their homes or beds.
“I like to compare [severe ME/CFS] to staying up for two nights in a row while fasting, then getting drunk. The state you would be in on the third day—hung over, not having slept or eaten in 3 days—is close, but still better than many ME/CFS patients feel every day. “Total body shut down” would be a better phrase, because you are at a point where your body physically does not have the energy to keep going.” - Whitney Dafoe, severe ME/CFS patient
ME/CFS has many symptoms that affect the entire body, and most people with ME/CFS do not feel normal or healthy when they aren’t in PEM. ME/CFS can cause extreme fatigue, severe headaches and body pain, weakness, insomnia, nausea and more. Someone with ME/CFS experiences some or all of these symptoms all the time, and their symptoms get much worse during PEM.
For people with ME/CFS, avoiding PEM is very important because triggering PEM too often leads to worsened disease. Worsened ME/CFS means more symptoms overall and an even lower threshold for triggering PEM.
This cycle can lead to very severe disease where the person is unable to get out of bed or tolerate light and sound.
​
People with ME/CFS have very low quality of life compared to healthy people, but also compared to many people with other long-term illnesses. The reason for this is there are no approved treatments for ME/CFS–there’s no medicine, surgery or therapy that really helps most people with ME/CFS.
Scientists are learning more about ME/CFS every year. However, the government does not spend as much money on research for ME/CFS as it should based on how much it affects the health of Americans. In fact, ME/CFS is one of the least funded diseases compared to how serious it is.
​
​Since millions more Americans are now suffering from ME/CFS after getting COVID, it is more important than ever to fund research and clinical trials to understand this disease and restore quality of life to patients.