I recently gave a workshop at The Southern California Counseling Center entitled “What do Psychotherapists need to know about Long Covid, ME/CFS, and Other “Invisible” Illnesses? How to effectively support patients and caregivers.”
According to The Census Bureau, as of July 2022, 16.3 million (around 8%) of working age Americans have Long Covid, also known as Post-Acute Covid-19 Syndrome (PACS). Recent studies indicate that over 40% of Long Covid patients meet the diagnostic criteria for Myalgic Encephalomyelitis (ME/CFS). So, millions of new patients worldwide are developing a complex, chronic, and debilitating disease for which there are no FDA approved treatments. Due to the increasing number of cases, scientists around the world are finally receiving more funding to conduct research into ME/CFS and other Long Covid-related syndromes, but research and development of new treatments is a long, slow process.
Long Covid and ME/CFS affect multiple body systems and have many physical and cognitive symptoms. The hallmark symptom of ME/CFS is Post-Exertional Malaise (PEM): reduced functioning and severe worsening of symptoms after even minimal physical or cognitive exertion. A patient with moderate illness may appear healthy when they are out in the world, but we don’t see them on the days when they cannot get out of their bed or tolerate light or sound. According to ME Action Network, “75% of those affected are unable to work and 25% are homebound or bedridden.”
ME/CFS patients have been neglected and gaslighted for decades because the medical and psychotherapeutic communities didn’t understand the disease and often assumed it was “all in the head.” Most standard medical tests would appear normal, leading doctors to assume that the problem was psychosomatic. CBT therapy and Graduated Exercise Therapy (GET) were often prescribed, but CBT did not address the physical symptoms (or their reality) and GET caused harm to patients with PEM. Only recently have scientists identified diagnostic biomarkers and developed tests to confirm the physical damage caused by ME/CFS.
Chances are high (and getting higher every day) that you know someone who has been afflicted with one of these illnesses. If you would like to learn more about Long Covid and ME/CFS, I’m sharing the Resource List I created for my workshop.
There are many other great resources out there – these are some that I have found particularly helpful and informative.