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BERLIN, Germany — Long COVID continues to be a dire issue for many. In a recent study, German researchers found that individuals who continue to experience severe fatigue six months after a COVID-19 infection may remain physically impaired for up to 20 months afterward.

This prolonged impairment is particularly evident in those who develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a result of post-COVID syndrome (PCS). However, patients with similar symptoms who do not meet the criteria for ME/CFS tend to experience gradual improvements in their condition.

PCS, or long COVID, affects individuals who continue to have health issues three months after contracting SARS-CoV-2, the virus responsible for COVID-19. These individuals experience ongoing symptoms for at least two months without any other underlying explanation. Common symptoms of PCS include breathing difficulties, concentration problems, and extreme fatigue that does not significantly improve with rest and recovery. Many patients with PCS struggle to carry out daily activities, and even minimal exertion can worsen their condition. This phenomenon is known as exertion intolerance and is more prevalent among women than men.

The study involved a comprehensive medical examination of 106 participants, most of whom were women, over several months. Researchers from Charité – Universitätsmedizin Berlin and the Max Delbrück Center discovered that individuals with severe fatigue and exertion intolerance stemming from PCS continued to suffer from these symptoms even after 18 months following their initial infection. Only half of these patients, those who did not meet all the ME/CFS diagnostic criteria, experienced gradual symptom improvement.

Researchers identified two distinct groups of PCS patients with severe fatigue and exertion intolerance. One group met the diagnostic criteria for ME/CFS, a complex neuroimmunological disease characterized by severe fatigue, exertion intolerance, and post-exertional exacerbation of symptoms that can lead to physical disability. The second group exhibited similar symptoms, but they were generally less severe, and post-exertional symptoms were milder and shorter-lived.

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The study revealed that the second group of patients, who did not fully meet the criteria for ME/CFS, experienced improvements over time, including reduced fatigue, general malaise, pain, and concentration problems. These patients often saw enhancements in their functional ability and, in some cases, were able to return to work. Conversely, patients with ME/CFS experienced minimal changes in their symptoms, with only a few exceptions.

Researchers noted that grip strength at the onset of the disease could serve as an indicator of the prognosis for PCS patients meeting the ME/CFS criteria. Those with stronger grip strength initially tended to have less severe symptoms up to 20 months later. Further research is needed, though, to validate the significance of grip strength as a prognostic factor.

“The WHO [World Health Organization] puts the number of people living with long COVID in Europe at about 36 million right now. Most of them experience impairments in daily life, and many can no longer lead a normal life at all,” says Carmen Scheibenbogen, professor and acting director of the Institute of Medical Immunology at Charité and the head of the Charité Fatigue Center, in a university release.

“Even before the pandemic, there were an estimated 3 million people with ME/CFS in Europe, and the data we now have suggest that there are now twice that number due to the pandemic. Our study shows that most people with ME/CFS remain severely ill. In addition to ramping up our efforts to find effective therapies, this means we also need to quickly establish health care facilities where patients can receive multidisciplinary care based on current scientific findings and clinical experience.”

In the absence of such treatments, study author Dr. Judith Bellmann-Strobl, senior physician with the Neuroimmunology Outpatient Clinic at the Experimental and Clinical Research Center, recommended that patients pace themselves and avoid overexertion.

“Pacing can prevent post-exertional malaise, a worsening of the person’s condition,” explains Dr. Bellmann-Strobl. “The better patients do with pacing, the less severe their symptoms. People should be very careful in feeling out their limits in terms of exertion. Professional guidance can help to prevent overexertion.”

The study is published in the journal eClinicalMedicine.

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