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Not too long ago, if you told people you had chronic fatigue syndrome, you would have had to deal with a lot of skepticism from friends, family… even many doctors. They may have even told you your symptoms were all in your head.
But in recent years we’ve learned a lot more about this severe illness. It’s now known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disease that’s usually triggered by an infection and often develops into a chronic condition.
Symptoms include fatigue, physical weakness, headache and muscle pain. It can also cause neurocognitive and immunological symptoms, as well as symptoms of autonomic nervous system dysfunction.
But the main characteristic is something called post-exertional malaise. This means that when someone with chronic fatigue syndrome (ME/CFS) does an activity that’s even mildly taxing physically or mentally, they’ll experience a dramatic increase in their symptoms that often lasts for a day or longer.
Previous viruses are known to trigger the condition, including the Epstein-Barr virus, the dengue virus and enteroviruses, the same family of viruses that includes polio. Now, recent research out of Germany has added another virus to that list — one we’ve all become much too familiar with…
Is it long COVID or chronic fatigue syndrome?
Before the COVID-19 pandemic, an estimated 0.3 percent of the population was suffering from chronic fatigue syndrome (ME/CFS). However, experts believe the pandemic will result in a significant increase in that number.
Since the beginning of the pandemic, experts have suspected that SARS-CoV-2, the virus that causes COVID-19, can cause ME/CFS. So, a group of researchers from Charité – Universitätsmedizin Berlin and the Max Delbrück Center for Molecular Medicine (MDC) decided to conduct a well-controlled study to determine whether that’s the case.
As part of the study, experts examined 42 individuals who were experiencing persistent, severe fatigue and impaired daily functioning six months after their infection with SARS-CoV-2. Other details on the participants included:
- Most couldn’t perform light work for more than two to four hours a day. And some were unable to work and struggled to care for themselves.
- Three of the participants needed hospitalization during their COVID-19 infection, though none required oxygen.
- 32 of the patients were classified as having mild COVID-19; they didn’t develop pneumonia, but they had fairly severe symptoms including fever, cough and muscle and joint pain for 1-2 weeks.
- None of the 42 patients had been vaccinated since their infections occurred during the first wave of the pandemic.
For comparison, the researchers looked at 19 individuals matched by age and gender who had developed chronic fatigue due to a non-COVID-related infection, but experienced a period of illness similar to the COVID patients.
The study results show that even after experiencing mild COVID-19, a subset of patients will develop symptoms that meet the diagnostic criteria for chronic fatigue syndrome (ME/CFS). A second subset of post-COVID patients had similar symptoms, but differences in laboratory results from the first subset. This could indicate differences in underlying mechanisms.
“Suspicions that COVID-19 might trigger ME/CFS initially arose as early as during the first wave of the pandemic,” says Dr. Carmen Scheibenbogen, a professor and acting director of Charité’s Institute of Medical Immunology on Campus Virchow-Klinikum. She also oversees the work of the Charité Fatigue Center, which specializes in the diagnosis of ME/CFS.
“Providing the scientific evidence to confirm these assumptions, however, is anything but a trivial task,” Scheibenbogen says. “This is partly due to the paucity of research into ME/CFS and the fact that there are no universally accepted diagnostic criteria. Thanks to an extremely thorough diagnostic process and a comprehensive comparison with patients who developed ME/CFS following non-COVID-related infections, we have now been able to show that COVID-19 can trigger ME/CFS.”
Two different markers: Persistent inflammation or impaired blood supply
About half of the post-COVID patients examined for the study met the chosen diagnostic criteria for chronic fatigue syndrome (ME/CFS). The other half presented with similar symptoms, though their post-exertional malaise was milder and only lasted for a few hours. By contrast, chronic fatigue syndrome (ME/CFS) patients reported post-exertional malaise that persisted into the following day.
The researchers connected data on symptoms and determined various laboratory parameters. Then, they compared these parameters with hand grip strength, which was reduced in most of the participants.
According to Scheibenbogen, individuals with milder exertional intolerance had reduced hand grip strength if they had elevated levels of interleukin 8. “In these cases, reduced muscular strength may be caused by a persistent inflammatory response,” she says.
“In the ME/CFS group, however, hand grip strength was correlated with the hormone NT-proBNP, which can be released by muscle cells when oxygen supply is insufficient,” Scheibenbogen observes. “This suggests that, in these individuals, muscle weakness may be caused by an impaired blood supply.”
The two groups may also differ in terms of disease progression. “In many people whose symptoms are indicative of ME/CFS but who do not meet diagnostic criteria, symptoms appear to improve over time,” Scheibenbogen says.
These findings could help researchers develop specific treatments for chronic fatigue syndrome (ME/CFS) and post-COVID syndrome, also known as long COVID.
If you’ve had COVID-19 and you’ve experienced any of the symptoms of ME/CFS for longer than six months, make sure you see your doctor. They can help you determine whether you’re suffering from long COVID or chronic fatigue syndrome (ME/CFS).
If you are diagnosed with chronic fatigue syndrome (ME/CFS), there aren’t a lot of treatment options. But there are a few things you can do to help lessen your symptoms. For instance, taking a CoQ10 supplement along with nicotinamide adenine dinucleotide (NADH) has been shown to help reduce fatigue in patients with ME/CFS.
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Charité study provides evidence to support long-held suspicion — Charité – Universitätsmedizin Berlin