Long-haulers Syndrome - CDC Guidelines Coming Soon
The Centers for Disease Control and Prevention (CDC) is finalizing new guidelines to help clinicians diagnose and manage long COVID, also known as post- acute sequelae of SARS-CoV2 infection (PASC).
In testimony before Congress last week, John Brooks, MD, a medical epidemiologist at the CDC's Division of HIV/AIDS Prevention, related that the diagnostic and treatment guidelines were going through the clearance process at the agency should be coming out very shortly.
For many doctors and patients who are struggling to understand post-Covid symptoms that persist for months after the initial viral infection, the guidelines can't come soon enough.
Jennifer Possick, MD, who directs the post-COVID recovery program at Yale New Haven Hospital in Connecticut, testified that the tidal wave of patients she and her colleagues were seeing was overwhelming.
“We are swamped by the needs in our community. This year, we have seen more patients with post-Covid-19 conditions in our clinic alone than we have seen new cases of asthma and COPD combined," she said. "The magnitude of the challenge is daunting."
Long-COVID patients were also invited to testify to the subcommittee. They described months of disability that left them with soaring medical bills and no way to work or pay them off.
"I am now a poor, black disabled woman, living with long COVID," said Chimere Smith, who said she had been a schoolteacher in Baltimore before becoming ill with Covid-19. She said COVID had affected her ability to think clearly and caused debilitating fatigue, which is now preventing her from working.
People suffering with ME/CFS and longstanding fibromyalgia are familiar with this picture and see a clear parallel to their situation.
Doctors have long recognized that viral infections can act as catalysts for fatigue, gut issues, and other health problems that persist long after the infection itself has gone. A 1987 report in the Journal of the Royal College of General Practitioners described the typical presentation of post-viral syndrome:
“The syndrome typically follows an upper respiratory tract infection from which the sufferer fails to make a full recovery,” the author wrote. The “cardinal symptom” is profound fatigue, but poor memory, lack of concentration, and sleep disturbances are also common characteristics.”
Where to go from here??? Researchers first need to create a widely accepted definition of this syndrome. It is the only way for scientists to get on the same page when diagnosing and treating this condition.
A medical syndrome is defined as a group of patients who possess the same symptoms and meet an agreed upon set of diagnostic criteria.
Once a clear set of diagnostic criteria are in place, then we can begin testing different treatments and therapies and find our way to generally accepted, evidence-based treatment programs. Thus, the forthcoming CDC diagnostic criteria will be a welcome next step.
Stay tuned for more important information on this quickly evolving field!
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Jon D. Kaiser, M.D.