International experts convened in Berlin on Monday and Tuesday to address the growing concerns surrounding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The specialist conference aimed to exchange ideas on improving care for those affected by ME/CFS, exploring existing therapies, and assessing the progress of current research in the field. The event was held in conjunction with International ME/CFS Day on May 12.
Approximately 200 doctors and scientists from around the world participated in the conference. The scientific direction was led by Carmen Scheibenbogen, Director of the Charité Fatigue Centre in Berlin, and Uta Behrends, head of the Chronic Fatigue Centre for Young People at the Klinikum der TU München and the München Klinik Schwabing. Their leadership brought together experts committed to advancing understanding and treatment of ME/CFS.
Since the onset of the COVID-19 pandemic, the number of individuals affected by ME/CFS has increased. Experts note that the incidence has likely doubled during this period. "It is assumed that the numbers have doubled during the pandemic," explained Scheibenbogen.
Around 600,000 people in Germany are afflicted with ME/CFS, according to health insurance companies and professional societies. This figure, already in the six-digit range, may have increased substantially due to the pandemic. The chronic disease predominantly affects younger people, and those suffering are often so severely ill that they cannot even leave their beds.
According to Die Zeit, ME/CFS is characterized by symptoms such as severe exhaustion, concentration disorders, and sleep disturbances that persist for at least six months. A key characteristic is the worsening of symptoms after physical and mental exertion, which impairs the quality of life for those affected.
The incurable disease has gained more attention due to the COVID-19 pandemic and discussions about the long-term consequences of COVID-19, known as Long COVID. ME/CFS sometimes begins with a viral infection and is considered the most severe form of Long COVID. However, many individuals were already affected before the pandemic, showing that ME/CFS is not a new concern but one that has been amplified in recent times.
"The treatment options have so far been limited," stated Scheibenbogen. She emphasized the urgent need for better care and effective medications. "It is important to draw attention to the inadequate care and the lack of medications for ME/CFS and Long COVID, even though there have been a number of important measures recently," she said.
"In medical studies, ME/CFS has so far been hardly conveyed; accordingly, the interest in further education is great," noted Scheibenbogen. This gap in medical education contributes to the inadequate care patients receive and underscores the importance of conferences like the one held in Berlin.
During the conference, the topics of patient care and medication studies were focal points. Experts exchanged ideas on improving care strategies, exploring potential therapies, and sharing the latest research findings. The collaboration aimed to enhance understanding of ME/CFS and to foster developments that could lead to better outcomes for patients.
People with ME/CFS are often so severely ill that they cannot participate in daily activities, leading to personal and societal impacts. The disease's prevalence among younger individuals further compounds these challenges, as it affects people in their most productive years.
The article was written with the assistance of a news analysis system.