Sustained Consequences: The Extended Toll of Severe Long COVID

Studies indicate that people experiencing post-COVID syndrome often endure considerable physical limitations up to 20 months following their initial infection. Those who are diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) especially continue to face severe symptoms.

A research project by Charité monitors patients experiencing intense fatigue over a period of 20 months.

Recent research reveals that individuals with post-COVID syndrome, who are still fatigued six months after their initial infection with the coronavirus, continue to face significant physical limitations up to 20 months later. The overwhelming majority of those diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) continue to be critically ill without any noticeable improvement. In contrast, individuals with similar symptoms but without an ME/CFS diagnosis tend to experience a gradual alleviation of their symptoms.

Individuals still experiencing health issues three months after a SARS-CoV-2 infection, and with symptoms persisting for at least two months without any other identifiable cause, are categorized as having post-COVID syndrome (PCS), commonly referred to as “long COVID.”

Symptoms are diverse, ranging from respiratory issues to concentration difficulties and a lack of endurance. A significant number of people with PCS report a form of fatigue that is not alleviated by regular rest and recuperation. Many of these individuals find it challenging to manage everyday activities, and minor physical effort often worsens their condition, a situation termed as exertion intolerance. This condition is notably more prevalent among women.

Many are naturally concerned about the duration of these symptoms. Data from various studies covering the first few months post-infection suggest that the length of recovery is directly related to the severity of the initial infection. While many do see improvement within a year, the long-term trajectory of the illness remains uncertain for others.

Examining Persistent Fatigue Following COVID-19

The newly released study focuses on those still grappling with severe fatigue and exertion intolerance six months after contracting the virus. Unlike research relying solely on patient testimonials, this study involved an exhaustive medical evaluation of 106 participants—predominantly women—at three different time intervals spread over several months.

Dr. Judith Bellmann-Strobl, the senior author of the study and a principal physician at the Experimental and Clinical Research Center (ECRC), states, “Regrettably, our findings indicate that those with post-COVID syndrome experiencing severe fatigue continue to be ill over 18 months post-infection. Only half—those without the full spectrum of ME/CFS symptoms—see a gradual improvement in at least some symptoms.”

Differentiating Types of Fatigue in PCS Sufferers

Last year’s observations highlighted that long COVID patients with severe fatigue and exertion intolerance could be divided into two categories. Some meet the diagnostic criteria for ME/CFS, a complicated neuroimmunological condition characterized by severe fatigue, exertion intolerance, and exacerbation of symptoms post-exertion, leading to physical incapacitation. Others, in the second category, manifest similar symptoms but typically experience less severe and shorter-lasting post-exertional symptoms.

The current study demonstrates that the latter group tends to show some improvement over time, not just in fatigue but also in general discomfort, pain, and focus issues. Their functional abilities often ameliorate, and some have even returned to work. In contrast, patients with ME/CFS showed negligible changes, with very few exceptions.

“Seven out of 55 ME/CFS patients showed some improvement in their physical limitations,” explains Bellmann-Strobl. “However, the medical basis for this remains unidentified.”

Grip Strength: A Future Metric?

An intriguing observation from the study indicates that initial grip strength may predict the future severity of ME/CFS symptoms. Prof. Carmen Scheibenbogen, Acting Director of the Institute of Medical Immunology at Charité, comments that “Grip strength serves as both a marker for the initial severity of the illness and a predictor for the future progression of ME/CFS.” Further studies are required to validate its prognostic value.

The World Health Organization estimates that approximately 36 million people in Europe are currently affected by long COVID, impacting their daily lives to varying degrees. “The data now suggests that the number of people with ME/CFS has doubled due to the pandemic, requiring increased efforts to develop effective treatments and healthcare facilities informed by contemporary scientific insights and clinical expertise,” Scheibenbogen states.

In the absence of treatments addressing the root cause of post-COVID syndrome and ME/CFS, the primary recommendation for patients is to manage their energy levels carefully and avoid overexertion. Tools like fitness trackers, heart rate monitors, activity diaries, and relaxation techniques can aid in this effort.

Bellmann-Strobl emphasizes, “Appropriate pacing can mitigate post-exertional malaise, worsening the patient’s condition. Professional advice can provide valuable guidance in preventing overexertion.”

Reference: “Long-term symptom severity and clinical biomarkers in post-COVID-19/chronic fatigue syndrome: results from a prospective observational cohort” by Franziska Legler, Lil Meyer-Arndt, Lukas Mödl, Claudia Kedor, Helma Freitag, Elisa Stein, Uta Hoppmann, Rebekka Rust, Kirsten Wittke, Nadja Siebert, Janina Behrens, Andreas Thiel, Frank Konietschke, Friedemann Paul, Carmen Scheibenbogen, and Judith Bellmann-Strobl, published on 18 August 2023, in eClinicalMedicine.
DOI: 10.1016/j.eclinm.2023.102146

Frequently Asked Questions (FAQs) about Long-term impacts of post-COVID syndrome

More about Long-term impacts of post-COVID syndrome

• Charité Study on Post-COVID Syndrome
• World Health Organization on Long COVID
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
• eClinicalMedicine Journal Publication
• SARS-CoV-2 Infection and Its Aftermath
• Diagnostic Criteria for ME/CFS
• Pacing Techniques for Chronic Illness
• Long-term COVID-19 Research Initiatives
• Tools for Managing Chronic Fatigue
• Experimental and Clinical Research Center (ECRC) Study