In the year plus since the World Health Organization (WHO) declared COVID-19 a global pandemic, we’ve learned a lot about COVID. We’ve learned how it spreads. We’ve learned how to more effectively treat severe cases. And, most importantly, we’ve learned how to stop COVID infections—through masking, social distancing, and especially with vaccines.
Unfortunately, there’s still a lot we don’t know. We don’t know why some people are asymptomatic and others are fighting for their lives in the hospital. We don’t know how future variants might impact vaccine efficacy. And we don’t know why some folks, even those with non-severe cases, end up experiencing symptoms weeks and months after their initial infection or how to help those folks return to their pre-infection selves.
Patients who experience ongoing symptoms are commonly called long-haulers because they are experiencing a form of long COVID. (The scientific name for this condition is Post Acute Sequelae of SARS-CoV-2 (PASC).) Long COVID can affect any organ in the body, can present with a wide range of symptoms, both physical and mental, and often testing does not reveal an obvious cause to the symptoms. As a result, folks who are experiencing Long COVID symptoms cannot find relief from local doctors, many of whom end up invalidating patients and leaving them with no recourse.
That’s about to change—hopefully.
New CDC Guidelines For Long COVID Urge A Patient-Centered Approach
On June 14, the CDC released interim guidance for healthcare providers regarding treatment for Long COVID.
The CDC’s guidance urges healthcare professionals to take a patient-centered approach. They wrote, “Based on current information, many post-COVID conditions can be managed by primary care providers, with the incorporation of patient-centered approaches to optimize the quality of life and function in affected patients.” This is no doubt good news for patients on two fronts. One, while more and more Long COVID clinics are appearing, many folks do not have access to them. Even with means and access, it’s certainly easier to visit your primary doctor. Two, a patient-centered approach gives long-haul patients a chance to be heard.
The patient-centered approach includes a call for empathy. Within the key points of the guidance, the CDC acknowledges that patient advocacy groups have voiced concerns over the way patients are misdiagnosed, ignored, or brushed aside, particularly patients from marginalized groups. To address that, the CDC guidance urges an empathetic approach. “Sensitivity to and awareness of stigma, completing a full clinical evaluation, and maintaining an attitude of empathy and understanding can help address these concerns.”
Doctors Shouldn’t Rely Solely On Diagnostic Testing
There is currently no laboratory test to indicate Long COVID. Likewise, often patients who are experiencing symptoms have unremarkable diagnostic tests—meaning the diagnostic tests come back showing everything is normal. Something is wrong, though. Clearly, there’s a disconnect. In November 2020, Scary Mommy spoke with Dr. Noah Greenspan, DPT, who believed that we likely have not yet developed the appropriate diagnostic tests for Long COVID.
The CDC’s interim guidance offers a way to bridge that disconnect. They urge doctors to believe patients who are listing a variety of symptoms, even if diagnostic tests do not give an obvious reason for those symptoms. The guidance says, “The absence of laboratory-confirmed abnormalities or the decision to forgo extensive laboratory testing should not lead to dismissing the possible impact of a patient’s symptoms on their daily function.”
In its guidance, the CDC lists diagnostic tests that could be used, as well as other assessment tools to evaluate patients, including, Montreal Cognitive Assessment (MoCA) for neurological symptoms, PTSD Checklist for DSM-5 (PCL-5) for psychiatric conditions, and Post-Covid-19 Functional Status Scale (PCFS) for quality of life evaluation.
Treatment Options For Long COVID
In its guidance, the CDC recommended a number of treatment paths. They noted that the goal was to “optimize function and quality of life.”
With that in mind, the CDC notes that many post COVID symptoms can be improved through known treatments. Some patients may also benefit from a “comprehensive rehabilitation plan,” which could include speech therapy, physical therapy, and neurologic rehabilitation. Some patients may also benefit from physical rehabilitation—though caution should be used here.
The guidance also urges doctors to look at treatments used for other illness and syndromes, including myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, Lyme disease, and mast cell activation syndrome, because they cause similar symptoms in patients.
Step Toward Legitimizing Long COVID
In an interview with VerywellHealth, infectious disease expert Amesh A. Adalja, MD, senior scholar at the Johns Hopkins Center for Health Security, applauded the CDC’s guidance. He said that “The guidance is a good step toward formalizing the diagnosis and treatment of post-COVID syndromes.” He noted also that, “[The guidance] provide a basis for approaching a patient and thinking about how to direct the care of these individuals.”
However, it’s important to keep in mind that the guidelines are just that—guidelines. Adalja called the guidance a “framework,” noting that our knowledge of Long COVID is evolving.
The reality is there’s a lot we don’t know about Long COVID—not only with respect to diagnosis and treatment. But the one thing we can be certain of is that what patients need is someone to listen to them, to believe them, to support them to get back to the version of themselves they want to be.