An Evolving Landscape: Long Covid’s Impact on ME/CFS

It’s hard to believe that we’re well into the third year of the COVID-19 pandemic, which coincidentally overlaps with my time as Solve M.E.’s President and CEO.

In this time of great transformation — in the broader society, the healthcare space, and even our own organization — I continue to see the once-in-a-lifetime opportunity that COVID-19 presents to understand and address the underlying biological mechanisms of infection-associated diseases, including ME/CFS.

Today, I see Long Covid’s impact, not only on the research front, but also on public awareness, legislative opportunities, interest from pharmaceutical companies, and potential therapeutics.

Biotechnology company AIM ImmunoTech recently announced that the U.S. Food and Drug Administration (FDA) gave a green light to study Ampligen (rintatolimod) for the treatment of post-Covid conditions. This rare second chance comes a decade after the FDA did not approve Ampligen for the treatment of ME/CFS. Building on years of advocacy from the ME/CFS community, the unfortunate emergence of Long Covid reopened the opportunity to study this therapy again. If results are positive, it could bring the drug to people who had COVID-19 and experience symptoms such as fatigue and cognitive dysfunction, which could lead to its use as a potential therapy for ME/CFS.

Solve is committed to working with drug developers, representing the community’s needs, and helping design and execute clinical studies that address them.

Long Covid is already informing Solve’s investment in research. This year’s recipients of our Ramsay Research Grants demonstrate the importance of applying learnings from both ME/CFS and Long Covid to benefit all individuals suffering from shared hallmark symptoms, such as fatigue, brain fog, and post-exertional malaise (PEM). In one study, Dr. Deborah Duricka applies observations from a successful use of a therapeutic procedure that involves blocking specific nerves (stellate ganglion) using a localized injection to reduce symptoms of Long Covid. Their team will apply these findings to investigate the effect of this treatment on ME/CFS symptoms and physiology.

In another research program, Dr. Rob Wüst will study the mechanism underlying the development of PEM and skeletal muscle pain in people with Long Covid, investigating the role of small blood clots. The findings about PEM could have direct implications to ME/ CFS, including therapeutic options such as anticoagulants. At every turn, we are connecting ME/CFS and Long Covid for national and international audiences. By forging new connections with other patient communities and advocacy organizations, we multiply our cumulative strength and influence.

While the unmet needs continue to grow, I believe that we’re on the cusp of a new era of intensified research towards therapies. We work everyday to make this hope a reality.

Oved Amitay,
President and CEO

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