Hope for post-viral illnesses

Estimates of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) sufferers in the US range from 836,000 to 2,500,000. From 1,000,000 to 3,000,000 people in the US suffer from POTS (Postural Orthostatic Tachycardia Syndrome). Some people may be diagnosed with both syndromes.

So far, more than 40% of adults in the US have reported having COVID-19 in the past. Of those, 19% are still having symptoms of “long COVID.” Thus, 1 in 13 (or 7.5%) of US adults have “long COVID.” There are some symptom similarities among sufferers of ME/CFS, POTS, and “long COVID.”

Our son Rob is a self-taught expert on POTS and ME/CFS. His symptoms are consistent with both ME/CFS and POTS. He reads everything about these syndromes. For the first time in over a decade, he has hope that treatments may be discovered. COVID-19 has led to an avalanche of new research.

For about a year, he has followed a project by Germany’s University Hospital Erlangen in Bavaria and the Max Planck Institute for the Physics of Light. They are developing a drug named BC 007. Rob was encouraged by their Thursday report. (I’ve posted an English translation on a blog page here.)

The focus is autoantibodies found in ME/CFS sufferers and “long COVID” sufferers. So far, it’s just one patient, but it’s a sign of hope. Here’s a hopeful excerpt about her progress:

…her symptoms improved over many months: First, cognitive symptoms such as brain fog, poor concentration and limited short-term memory decreased, and later also noise and light sensitivity. Fatigue, muscle weakness, and POTS—the postural orthostatic tachycardia syndrome that causes tachycardia and dizziness in ME/CFS sufferers when they stand up—also decreased over several months. Driven by this initial success, the Erlangen researchers want to review both the diagnostics and the therapeutic approach in a larger number of patients with ME/CFS.

From “Berlin Cures…? Could BC 007 Help With Long COVID and ME/CFS?” by Cort Johnson, HealthRising, December 30, 2021