UniteToFight—a virtual conference on Long Covid and ME/CFS—took place on May 15 and 16, 2024. Organized by five patients with Long Covid and attended by over 10,000 people from all over the world, the conference focused on discussing progress and challenges with Long Covid and ME/CFS research; emphasizing the social impact of these diseases; and sharing ideas about how best to help researchers and patients moving forward. Among the dozens of researchers presenting were these eight experts funded by Solve M.E. or collaborating with Solve on key research projects:
- Dr. Akiko Iwasaki, renowned Long Covid expert from Yale University (Connecticut)
- Ms. Amy Mooney, community activist and occupational therapist specializing in helping people with complex chronic illnesses (Illinois)
- Dr. Amy Proal, president of PolyBio Research Foundation (Massachusetts)
- Dr. Bhupesh K. Prusty, professor at Riga Stradins University (Latvia) and Solve Ramsay Research Grant winner (Class of 2016)
- Dr. David Putrino, director of Long Covid and ME/CFS research at Icahn School of Medicine at Mount Sinai (New York)
- Dr. Carmen Scheibenbogen, head of the Immunodeficiency Outpatient Clinic at Chari-té Berlin (Germany) and Solve Ramsay Research Grant winner (Classes of 2016 and 2017)
- Mr. David Tuller, senior fellow in public health and journalism at the University of California, Berkeley (California)
- Dr. Rob Wüst, Long Covid and ME/CFS expert from Vrije University Amsterdam (Netherlands) and Solve Ramsay Research Grant winner (Class of 2022)
As the conference organizers post recordings of the conference over the next few weeks, we will summarize presentations of these eight researchers here.
Dr. Carmen Scheibenbogen
Dr. Carmen Scheibenbogen is head of the immunodeficiency outpatient clinic at Charite Universitatsmedizin (Berlin, Germany) and specializes in ME/CFS. Solve M.E. awarded her a Ramsay grant in 2016 to study autoimmune signatures in patients with ME/CFS. Since then, she has published close to a hundred papers about her research.
In this presentation, Dr. Scheibenbogen discussed the factors that may determine whether a person with Long Covid develops ME/CFS; how patients with both Long Covid and ME/CFS differ from patients with only Long Covid; and the importance of clinical trials to advance new treatments for these patients. She noted that about half of patients with Long Covid will develop ME/CFS. The patients who develop ME/CFS have more post-exertional malaise, more brain fog, and more light sensitivity than patients who do not develop ME/CFS. Dr. Scheibenbogen’s team believes that lower perfusion of capillaries causes these symptoms. Patients with Long Covid have inflamed capillaries, so their muscles get too little oxygen. With too little oxygen, mitochondria supply too little usable energy to muscle cells and dangerous elements build up (like protons, calcium, nitrogen), which damage the muscle. In about half of patients with Long Covid, the capillaries improve. But in the other half, the capillaries stay inflamed and the mitochondrial and muscle problems get worse—these people eventually develop ME/CFS.
Dr. Scheibenbogen ended by summarizing promising results of clinical trials to find biomarkers of patients with Long Covid who would probably also develop ME/CFS; to diagnose disease in these patients; and to treat these patients (for example, by using methods to remove dangerous autoantibodies, which induce ME/CFS; or by using steroids or hyperbaric oxygen therapy to treat inflammation). But her take-home point was that we urgently need more rapid trials to test these treatments to help patients.
Watch the recording of Dr. Scheibenbogen’s presentation here.
Dr. Rob Wüst
Dr. Rob Wüst is an exercise physiologist at the Vrije de Universiteit (Amsterdam, Netherlands) who specializes in symptoms of Long Covid and ME/CFS that affect physical exertion (as distinguished from those that affect cognitive or mental exertion). He received a Ramsay grant from Solve M.E. in 2022 to study muscle pain, post-exertional malaise, and treatments for pain and malaise in patients with Long Covid. In the past two years, he published seven papers on this topic.
Dr. Wüst has been studying the two most prominent symptoms of Long Covid—post-exertional malaise and general fatigue. Specifically, he has been finding ways post-exertional malaise differs from general fatigue and has found significant differences at the physiological and molecular levels.
Collecting muscle samples and questionnaire answers from people before they took an exercise-bike test and after, Dr. Wüst found patients with Long Covid differed from healthy participants in several ways. Some of these differences contribute to general fatigue; these usually involve structural changes in the body (for example, poorer mitochondrial respiration in muscles; less power output from muscle; more fast-fatiguing type 2 muscle fibers and less long-lasting type 1 muscle fibers; more fatigue-related metabolites). Other differences contribute to post-exertional malaise; these were quickly triggered by the exercise bike (for example, rapid changes to metabolites, infiltration of immune cells and microclots into skeletal muscles, and increased molecular markers for muscle damage).
These results are important because exercise does not help some patients with Long Covid or ME/CFS—it actually worsens their health. This distinguishes Long Covid and ME/CFS from other chronic diseases (like diabetes, heart failure, or depression), for which exercise generally helps patients. By understanding why patients with Long Covid or ME/CFS experience these symptoms, Dr. Wüst’s team is developing ways to treat both general fatigue and post-exertional malaise and guidelines for patients to reduce symptoms. For example, he explained how physical therapy may be helpful for some patients with Long Covid if they have no symptoms of post-exertional malaise (but only of general fatigue). Also, he stressed that patients must know their limits for physical activity and must pace themselves to avoid exceeding these limits.
Watch the recording of Dr. Wüst’s presentation here.
Check back soon for our summaries of the presentations by the other scientists listed above!
