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For many people, COVID-19 no longer seems like a major medical worry. But for others, it persists as a debilitating illness with a constellation of symptoms that can last for months or even years as long COVID.
Now medical professionals and researchers are questioning long COVID’s connections with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
Last week, the Santa Clara County Hospital and Health Committee held a special hearing to discuss long COVID and ME/CFS, with the objective to bring more awareness about the causes and symptoms of the conditions as well as best practices for treatment.
“Is long COVID and ME/CFS the same thing? As of right now, we don’t know for sure but there appears to be a lot of similarities in the symptoms as well as the pathologies,” said Dr. Bela Chheda, a physician at the Center for Complex Diseases who spoke at the Health and Hospital Committee hearing on Thursday, Aug. 29.
Health experts during the panel discussion described ME/CFS as a condition characterized by extreme and persistent fatigue – similar to long COVID. Dr. Melanie Hoppers, a physician at the Bateman Horne Center in Utah, provided a rundown of the common symptoms of ME/CFS. In general, people with ME/CFS have trouble doing the same activities that they did prior to their illness, she said.
Even seemingly minor physical or mental exertion can exacerbate the condition, a situation known as post-exertional malaise. “This is a worsening of a patient’s symptoms and level of function if they exceed their energy threshold,” Hoppers said.
Other symptoms of ME/CFS include problems with sleep, brain fog and dizziness, especially when changing from sitting to standing positions.
The majority of people with ME/CFS tend to develop the condition after experiencing an acute infection illness, like COVID-19, Hoppers said.
According to the Center for Disease Control and Prevention, about 15 million adults in the U.S. are living with long COVID. About half of all U.S. adults who have long COVID also meet the criteria for ME/CFS, Hoppers said. Before the pandemic, there were about three million people diagnosed with ME/CFS. By Hoppers’ estimate, that means there are currently about 10 million people experiencing symptoms associated with ME/CFS.
Despite the large number of cases, ME/CFS is still misunderstood and often misdiagnosed by the medical community. There also is no approved FDA drug to treat it, Hoppers said. As a result, people with ME/CFS often leave their doctor’s office discouraged and without adequate resources to help them manage their illness.
This was the case for Anita Enander, a former Los Altos City Council member who attended the hearing and has been living with ME/CFS for nearly ten years.
“Help your physicians know how to talk with their patients because to say, ‘Gee, your tests are normal. We don’t find anything wrong with you,’ is probably one of the most depressing things that a patient hears,” Enander said.
Panelists and commenters also described the irreversible harm that could occur when health practitioners push ME/CFS patients to exert themselves.
For Enander, a six-minute walk test, that she quit after five minutes, put her flat on her back for two months, she said, noting that more training needs to be provided for physical therapists working with ME/CFS patients.
Long COVID and ME/CFS in Santa Clara County
Since 2022, the incidence of long COVID in Santa Clara County has been on the decline, according to Dr. Supriya Narasimhan, an epidemiologist at Santa Clara Valley Medical Center.
Narasimhan largely attributed the decline to the county’s high vaccination rates, as well as to symptom recognition, management and recovery, which has gotten better since the beginning of the pandemic, she said.
In addition to monitoring long COVID, Santa Clara Valley Healthcare has been tracking ME/CFS patients. The number of long COVID patients with ME/CFS dropped 40% from 2022 to 2023 and another 21% in early 2024, according to Narasimhan.
Santa Clara Valley Healthcare treats long COVID and ME/CFS using a primary care model, which means that primary care physicians are the first point of contact for patients experiencing these symptoms. According to Narasimhan, this is particularly helpful for patients because there is no single diagnostic biomarker for ME/CFS.
“These patients don’t typically look unwell. When you examine them, there’s not a physical examination finding there’s a symptom. But when you have a long-standing relationship with a person, you know what’s their baseline and you know when something doesn’t seem correct or seems off,” Narasimhan said.
At Santa Clara Valley Healthcare, doctors also use a variety of strategies to help patients manage ME/CFS, Narasimhan said. This includes “pacing,” which is the gradual increase of physical and mental activity to avoid post-exertional malaise. Other treatment strategies include pain and sleep management, cognitive behavioral therapy, nutritional support and techniques to improve blood circulation.
However, Santa Clara County Board of Supervisor Joe Simitian pressed on whether it’s the right choice to rely on the primary care model. The county never created a specialized clinic for long COVID, and Simitian questioned whether this was putting too much pressure on primary care physicians “to be all things to all patients.”
The county serves about 400,000 to 600,000 patients, Simitian said. “How can we be confident that if one of those patients … presents to our system with ME/CFS, that it will be understood to be such and will be handled appropriately?” he asked.
Narasimhan said that even in specialist centers, like at Stanford’s ME/CFS clinic, patients still need a referral and insurance approval. “Regardless of which model you look at, the onus is still on that primary care physician to appropriately evaluate, do the initial screening as to whether this would potentially be compatible with ME/CSF as well as long COVID, and then make that appropriate referral,” she said.
Similarly, Chheda noted that ME/CFS is a multi-system disease and could fall through the cracks among different specialists. It’s also difficult for patients to get into specialty clinics like Stanford because the wait list is so long. Instead, Chheda advocated for five or more Bay Area counties to come together to create a broader “catchment area” that could share knowledge, expertise and resources for patients experiencing ME/CFS.
Simitian called for a follow-up report accounting for what has been done, what is being done and what can be done in the future to make sure that healthcare providers are aware of ME/CFS.
