Long COVID and Chronic Fatigue Syndrome (ME/CFS)

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Since the emergence of COVID 4 years ago, many survivors of the initial infections have come to discover that the effects stay with them longer than expected. This is the curse of “long COVID”. People with long COVID continue to experience symptoms for months after their initial illness, sometimes even after testing negative for the virus. They experience lack of energy, brain fog, and a host of other issues. Some people even go on to develop full myalgic encephalitis/chronic fatigue syndrome (ME/CFS).

Long COVID symptoms

The symptoms of long COVID can be extremely diverse and extend beyond what people normally experience during the initial COVID infection. The symptoms vary widely and may affect several different parts of the body, including the respiratory system, cardiovascular system, nervous system, and digestion. Symptoms can fluctuate over time, coming and going in waves that can seem like they will never end.

The symptoms of long COVID can be extremely diverse and extend beyond what people normally experience during the initial COVID infection.

Signs and symptoms include the following:

Respiratory issues

• extreme fatigue
• exhaustion that gets much worse after any exercise or exertion
• shortness of breath
• cough

Heart issues

• chest pain
• heart palpitations (feeling one’s heart pounding)
• feeling lightheaded

Neurological issues

• brain fog
• changes in taste or smell
• depression and anxiety
• headache
• trouble sleeping

Digestive issues

• stomach upset
• irregular bowel movements
• diarrhea

Who gets long COVID?

Unfortunately, predicting who will develop long COVID after their initial COVID infection is difficult. We have a few ideas, though. People who were most severely affected by COVID may be at higher risk. This includes people were hospitalized and whose initial infections lasted longest. People who already have immune system issues or autoimmune conditions before getting COVID are also at higher risk. Research additionally suggests that people who did not have the COVID vaccine prior to their initial infection are more likely to develop long COVID symptoms .

What is myalgic encephalitis/chronic fatigue syndrome (ME/CFS)?

Myalgic encephalitis/chronic fatigue syndrome (ME/CFS) is a condition where people experience a sudden or gradual onset of extreme fatigue that no amount of sleep or rest can remedy. This fatigue gets much worse after any physical exertion as well. People have trouble standing for more than a short time and frequently get lightheaded. Many also get brain fog – trouble concentrating, short term memory loss, and word finding difficulty. For some, ME/CFS just impairs activities of daily life, work, and socializing, but others become fully house-bound or bed-bound.

People with ME/CFS may have pains throughout their bodies, including muscle and joint issues and recurring headaches. Their lymph nodes in the armpits and neck can become painful and swollen. They get digestive issues and become sensitive to smells, lights and sounds. They also report shortness of breath and heart palpitations.

What causes ME/CFS?

ME/CFS normally appears after viral or bacterial infections, such as from the Epstein-Barr virus (infections mononucleosis) and Lyme disease. Researchers believe that ME/CFS may come from an immune system gone awry following these infections. The process may also involve unregulated levels of cortisol, the stress hormone, which helps regulate the immune system. Blood tests show markers indicating over-active immune systems. Additionally, ME/CFS seems to run in families and is much more common in women than in men.

Finding a link

Knowing that ME/CFS usually appears after infections, we’re now seeing the same effect from long COVID. There is a significant overlap in symptoms of long COVID and ME/CFS. They are so similar that a casual observer may think they are the same illness. In fact, there are a number of symptoms that they don’t share. For example, long COVID affects sense of taste and smell and causes breathing problems, while ME/CFS does not.

New research has identified four separate groups – based on symptoms patterns – of people with long COVID. About a third of people had mainly heart and kidney problems, and another third had breathing issues, disrupted sleep, and anxiety. Another group suffered from mainly digestive and breathing impairments. The final group had nervous system symptoms and muscle and joins pains.

These results made it clear that long COVID is an incredibly diverse disease. Most people with long COVID never fully develop ME/CFS. However, enough do to make the link significant.

Moving forward

Unfortunately, another commonality between long COVID and ME/CFS is that there is no well defined treatment plan for either affliction. At this stage in the game, the best way to handle either disorder is to manage and work around the symptoms. For example, both groups of people are exceptionally susceptible to post-exertional malaise (PEM) – extreme exhaustion after activity. Depending on condition severity, activity can be as little as going on a walk. People need to find the physical and mental limits the disorders put on them and work within those boundaries. The same goes for all the other symptoms of these disorders. They are something that, for now, people need to learn to live with rather than expecting a cure to come soon. Current research is focusing on exploring new treatment methods. The hope is that better diagnostic tools and treatments will emerge, offering relief to people suffering from these debilitating conditions.