The 2nd International ME/CFS Meeting at Charité Fatigue Center was held in Berlin on May 11-12 2023, organized by two-time Solve Ramsay Research Grant winner Dr. Carmen Schiebenbogen. The event brought together leading researchers and healthcare professionals to discuss the latest advancements in understanding ME/CFS and Long Covid and aimed to exchange insights into the pathophysiology of these complex conditions, to discuss possible subgroups from specific characteristics, and to explore potential treatments.
Current and previous Solve network researchers presented their latest findings, including:
- Dr. Scheibenbogen (Solve Class of 2016 & 2017), who presented “ME/CFS as Part of the PCS Spectrum.”
- Dr. Rob Wust (Solve Class of 2022), who presented a poster outlining his Ramsay-funded work on skeletal muscle pain and post-exertional malaise (PEM) in patients with Long Covid: from pathophysiology to treatment.
- Dr. Francisco Westermeier (Solve Class of 2019), who presented “Assessing Endothelial Dysfunction,” directly related to his Ramsay-funded study, “Unraveling endothelial function in ME/CFS.”
- Dr. Bhupesh Prusty (Solve Class of 2016), who presented on “Mitochondrial Dysfunction and Herpesviruses in ME/CFS.”
Solve Research Senior Manager Kate Mudie presented the poster, “Time from symptom onset to ME/CFS diagnosis: 1987 to 2022.” The authors found that between 1987 and 2022, we saw an overall increase in the average time-to-diagnosis for Solve’s You + ME ME/CFS Registry participants. They hypothesized that several factors might explain this unexpected result, including:
- change from fee-for-service plans to prepaid health plans
- changing of ICD-9 and SNOMED codes over time
- newly developed case definitions
- use of the internet to better understand one’s own symptoms and disease, leading to self-diagnosis
View the poster here.
Left: Solve Ramsay Researcher Rob Wüst, PhD
Right: Solve Ramsay Researcher Efthymios Kalafatis with Solve Research Senior Manager Kate Mudie MSc
Kate also shared with us some of the key themes from the conference, which include:
- Are ME/CFS and Long Covid similar syndromes?
A significant focus of the conference was understanding the potential mechanisms by which viral infections, such as SARS-CoV-2, may lead to persistent symptoms and long-term health issues. There is emerging evidence that the underlying biology of both conditions may be similar. They share many symptoms, including core symptoms of fatigue and post-exertional malaise, and abnormalities of the immune, neurologic, metabolic, cardiopulmonary systems.
Solve Research Advisory Council member Dr. Anthony Komaroff found that 47% of people with Long Covid have persistent fatigue at least six months after infection, and that 13-25% meet the Institute of Medicine criteria six to nine months after infection.
Dr. Scheibenbogen has diagnosed 50% of Long Covid people in her cohort with ME/CFS according to the Canadian Consensus Criteria.
- Biomarkers and Diagnostic Tools
Continued efforts are being made to identify reliable biomarkers that can be used to diagnose and to monitor ME/CFS and Long Covid. Researchers discussed promising candidate markers, including specific immune molecules (Dr. Anna Aschenbrenner) and metabolites (Dr. Francisco Westeremeier), antibodies, and autoantibodies (Dr. Bettina Hohberger, Dr. Martina Seifert, Dr. Andreas Goebel, Dr. Nuno Sepulveda, and Dr. Bhupesh Prusty) and cognitive patterns (Dr. Carsten Finke). If any of these biomarkers are verified, they could help to identify who is more likely to go on to develop these conditions, to be able to identify people who develop these conditions earlier on so that they are more likely to have a better health outcome, and to help track the progression of their disease.
- Treatment Approaches
Various therapeutic strategies were discussed during the conference. Researchers highlighted the need for treatments to target people with specific symptom profiles and specific pathophysiology of their disease (Dr. Luis Nacul, Dr. Michael Stingl, Dr. Andrea Maier, and Dr. Klaus Wirth). These included medications specifically for people who experience pain, sleep dysfunction, autonomic nervous system impairment, inflammatory responses, and an imbalance in vasodilator/vasoconstrictor. Not all treatments work for everyone but treatment for everyone should start as early as possible for better clinical outcomes. The immunoadsorption procedure was suggested by two German clinicians (Dr. Wolfgang Reis and Dr. Andrea Maier) as a treatment for people with ME/CFS, especially those who are severely affected, and for people with Long Covid. The procedure removes specific blood group antibodies from the blood; however, it is not available in every country or in every region of a country. The role of personalized medicine approaches, including symptom-based therapies and multidisciplinary care, was emphasized to address the diverse needs of patients.
- Subgrouping ME/CFS and Long Covid
Both conditions present differently from person to person. By identifying and studying different subgroups, researchers and healthcare professionals can gain insights into the underlying mechanisms and specific features of each subgroup. This allows for the development of personalized treatment approaches that target the unique characteristics and needs of each subgroup. Tailored treatments have the potential to be more effective and improve patient outcomes.
Researchers discussed the following ways to subgroup: differences in autonomic nervous system impairment (Dr. Pawel Zalewski), having hypermobile joints vs not (Dr. Peter Rowe), types of sleep problems or brain fog, presence of certain autoantibodies or antigens, whether inflammation or endothelial dysfunction is experienced.
Additionally, Dr. Peter Rowe talked about his joint hypermobility findings, indicating that he found no significant differences between people with ME/CFS who had joint hypermobility when compared to those with ME/CFS who did not have joint hypermobility. However, his sample size was small, and we intend to publish a paper using the larger Solve You +ME Registry sample size to show that there are some significant differences between the groups. Dr. Rowe noted, “Diagnosing joint hypermobility in ME/CFS can help to shed light on other conditions that they may be experiencing but don’t know yet.”
Dr. Christian Puta presented “Understanding PEM,” and found that people with ME/CFS have less aerobic capacity compared with healthy controls, this means that, even at lower levels of activity, their body switches to anaerobic respiration earlier because the demand for energy exceeds the rate at which oxygen can be supplied to the working muscle. This leads to more lactic acid accumulation in the tissues, as well as local acidosis, even at lower levels of activity. He noted that we must measure anaerobic activity, as well as aerobic activity in ME/CFS patients.
Dr. Nuno Sepulveda stressed that open-access data means that the data can be reanalyzed in different ways with different theories, especially by biostatisticians. This allows for cost-effective research to be conducted with new and better understandings.
Dr. Luis Nacul stressed that clinicians must remember to be great health professionals and that certain traits differentiate great doctors from good doctors, including good communication, empathy, being a good listener, passion, resilience, staying relaxed, attention to detail, and playing detective.
The overall takeaway of the conference was that insights from ME/CFS research could help in the development of research with Long Covid and ultimately improve our efforts to understand its pathophysiology, early diagnosis, and prognosis, as well as help to identify effective treatments for both conditions.