COVID-19, which is caused by SARS-CoV-2, can have many unexplained, long-term effects on the body even after initial recovery. This is called long COVID or post-COVID syndrome.
Long COVID can affect multiple organs, and according to scientists, the features of this post-viral syndrome may lead to diagnosis with a condition called chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME). Read on to learn more about CFS/ME and discover its causes, symptoms, treatment methods, and why we need more research to understand this condition better.
What Is CFS/ME?
CFS/ME is a complex illness. Its main feature is a feeling of extreme tiredness that lasts for a minimum of 6 months and occurs without any obvious cause or medical condition. This tiredness doesn’t improve with rest and is likely to worsen after any physical or mental activity. Another term for this condition is systemic exertional intolerance disease (SEID).
Although CFS/ME can affect anyone, medical professionals have noted that it occurs more frequently in adults between the ages of 40 and 60 years and is four times more common in women than in men.
According to research, around 836,000 to 2.5 million people in the United States are currently dealing with chronic fatigue syndrome. However, an estimated 90% of people with CFS/ME have not yet been diagnosed and may struggle to get better without timely and appropriate treatment.
What Are The Causes and Symptoms of CFS/ME?
The causes of CFS/ME are still being researched. Some potential causes include psychological stress, viral infections, or a combination of multiple factors.
As one example, according to the U.S. Centers for Disease Control (CDC), around 150 of 300 patients with COVID-19 infection exhibit permanent symptoms like fatigue three weeks after a positive test. If this chronic fatigue persists for more than 6 months, it could be diagnosed as CFS/ME.
Besides SARS-CoV-2, other infectious organisms that have been associated with CFS/ME include:
- Viruses like Epstein-Barr, West Nile, dengue, herpes, enteroviruses, parvovirus, and Ross River
- Bacteria like Mycoplasma pneumonia, Coxiella burnetii, and Borrelia burgdorferi
- Parasites like Giardia lamblia
The primary symptom of CFS/ME is persistent tiredness that doesn’t get better with rest and may worsen with activity. This phenomenon is called post-exertional malaise. Other symptoms of this condition include unrefreshing sleep, forgetfulness, headaches, dizziness, sore throat, sensitivity to light, muscle or joint pain, light fever, confusion, depression, and difficulty thinking or concentrating.
CFS/ME symptoms can even mimic the flu sometimes. On the other hand, people with CFS/ME may not always appear physically ill. Instead, their behavior may be affected in some of the following ways:
- They may struggle to complete some daily tasks like cooking, showering, and doing household chores.
- They may find it difficult to hold down a job or complete their education if they’re still studying.
- They may not be able to participate in social activities, which could affect their family and social lives.
- They could struggle to function as well as they did before their illness. In fact, one in four people with CFS/ME may even become bedridden or housebound.
CFS/ME can last for years and even lead to serious disability.
How Is Myalgic Encephalomyelitis/ME Diagnosed and Treated?
The medical community still hasn’t established any specific diagnostic tests for CFS/ME. This means that the diagnosis for CFS/ME is based on clinical parameters like:
- The Duration of symptoms: If chronic tiredness and other symptoms last for more than 6 months and no other medical causes have been identified, CFS/ME could be diagnosed. However, it is recommended that children with some or all CFS symptoms see a doctor as soon as they get ill.
- The number of symptoms: If four or more symptoms are present and long-lasting, an illness could be CFS/ME.
There are no established treatments for CFS/ME yet. Most treatments focus on symptomatic relief. They may include steroids, antidepressant medications, health supplements, and counseling/psychotherapy.
Does CFS/ME Require More Scientific Attention?
Here are some reasons why more research on CFS/ME is needed:
- As the causes for CFS/ME have not yet been completely identified, there has been a lot of misinformation and neglect with regard to this condition. In fact, CFS was misclassified as a psychogenic disease for many years.
- Most cases of CFS/ME remain undiagnosed because a lot of medical schools don’t include it as part of their physician training, and healthcare providers consequently remain unfamiliar with this condition.
- This condition has been subject to stigmatization and gender biases in the past.
- There are no specific treatment regimens yet, slowing down patient recovery since they don’t get timely and appropriate help.
- This disease is more common and likely a bigger problem than you realize. It affects around 1 to 2.5 million Americans a year, of which 84% to 91% remain undiagnosed. Among those affected, many lose their jobs and up to 25% become bedbound or homebound.
- Patients with this condition have a reduced quality of life. It also places a greater burden on their caretakers.
- With respect to the burden imposed on caregivers, this is one of the most underfunded diseases in terms of research by the NIH.
- According to a recent report, long COVID has been associated with CFS/ME. The World Health Organization has also expressed concerns regarding the side effects of COVID vaccines, which may mimic CFS/ME in some cases. Therefore, more clarity is needed concerning CFS/ME disease mechanisms.
In summary, additional research is critical to improving our understanding and handling of CFS/ME.
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