A comprehensive new definition of extended COVID may make it easier for those who are afflicted to identify their illness and enhance diagnosis and care.
The definition for extended COVID was released on June 11 by the National Academies of Sciences, Engineering, and Medicine in the United States.
The accepted symptoms, time frames, and standards for proving infection have all varied amongst the previous definitions of protracted COVID (SN: 7/29/22).
Harvey Fineberg, a public health specialist who oversaw the committee that drafted the definition, claims that the lack of standardization “left many patients in the lurch without clear ability to be recognized for the condition that they had, with difficulty explaining to family and even to their caregivers.” “We heard from literally hundreds of people who had been living with COVID about the difficulties they faced in getting care, getting their needs met, and being heard.”
Over 1,300 individuals made contributions to the definition. Rather than using more medical terminology, such “post-acute sequelae of COVID-19,” which has also been used to characterize the long-term ailment, the committee chose to use the patients’ own word, “long COVID.”
Says Daria Oller, a physical therapist in New Jersey who developed long COVID in 2020, adopting the name the patients pushed for validates everyone with the disorder who has been fighting, often for years, to have their experience acknowledged. “People are now attempting to avoid using the lengthy COVID phrase, and we, the initial wave of patients, are pushing back. They disregarded us. We own that. We gave it a name.
According to Fineberg, the committee decided on the name because it is straightforward, well-known, and simple to explain during a webinar that introduced the concept.
Although the precise number of patients with lengthy COVID remains unknown, a recent survey indicated that over 17% of American adults have the illness. The respected body of scientific experts’ opinions are frequently taken into consideration when drafting laws, deciding on medical and scientific policies, and making regulatory judgments, even though the National Academies lack the regulatory or legal authority to impose adoption of the definition.
This is an overview of the lengthy COVID definition.
How long is COVID?
This illness is a member of a group of persistent medical disorders that develop following viral, bacterial, fungal, or parasitic infections. This covers long-term health issues like Lyme-associated chronic diseases and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
A medical condition known as protracted COVID is defined by the National Academies as one that lasts for at least three months following an infection with SARS-CoV-2, the coronavirus that produces COVID-19. Any organ or system in the body can be impacted by long-term COVID. More than 200 symptoms can appear in an individual; these include dyspnea, cerebral fog, blood clots, dizziness, extreme exhaustion after physical activity, taste or smell loss, rapid heartbeat, diarrhea, constipation, diabetes, and autoimmune diseases like lupus (SN: 2/2/22; SN: 8/21/23; SN: 1/4/22). These symptoms may manifest singly or in combination, be persistent, develop worse over time, or come in spurts where the patient gets better before getting worse again.
People who had mild to severe COVID initially may experience chronic symptoms; some may not even experience any symptoms at all from their initial infection. Because of this, the group that created the Academies’ definition states that a person can be diagnosed with extended COVID without necessarily having a positive COVID test result.
Both adults and children are susceptible to the illness, which can develop weeks or months after the initial infection appears to have cleared up. The committee left open the maximum amount of time that COVID might begin following the initial illness.
Currently, there are no biomarkers or blood tests that can be used by physicians to accurately diagnose protracted COVID. The report urges more investigation to identify these diagnostic instruments.
This definition is based on a report that was requested by the National Academies and the Social Security Administration on June 5. In a similar vein, the report discovered that protracted COVID can cause crippling symptoms that impair a person’s quality of life, capacity to work, and ability to function physically for years.
How come the definition is so wide?
According to the committee, the term is “intentionally inclusive.”
“We wanted to make sure that long-term COVID was not seen as a diagnosis of exclusion,” says Fineberg, president of the Palo Alto, California-based Gordon and Betty Moore Foundation. The revised criteria should encompass everyone experiencing residual symptoms from a coronavirus infection. Accordingly, Fineberg acknowledges that some individuals with chronic health issues brought on by other infectious diseases or other reasons may be misdiagnosed with protracted COVID.
According to committee member Monica Verduzco-Gutierrez, a physician specializing in physical medicine and rehabilitation at the University of Texas Health Science Center at San Antonio, this broad strategy is crucial for promoting health equity. The committee aimed to ensure that those who are asymptomatic, received a false negative test result, or lack access to testing due to early testing discontinuation could still be included in the criteria.
According to Ziyad Al-Aly, head of research at the VA Saint Louis Health Care System, “I think they got it right in the sense that they didn’t leave anybody out.” Al-Aly was among the impartial specialists who examined the document.
Is there going to be a definition change?
Indeed. According to the paper, the definition will be revised within three years, and maybe sooner if new research justifies it.
Fineberg states, “We are extremely aware that the definition is only as good as science can take us at this time.”
What does the definition entail in terms of long-term COVID patients’ health care?
The term, according to Al-Aly, “will be seen by patients and patients advocates as legitimizing the illness which they have been complaining about,” given “the gravitas of the National Academy of Medicine behind” it. “A lot of gaslighting occurs among medical professionals, providers, the community, and our society as a whole.”
Numerous studies have demonstrated that there are pervasive biological alterations, despite the fact that some individuals have written the illness off as a mental health issue, according to Verduzco-Gutierrez. “Makes it clear that long-term COVID is a physical health condition,” according to the definition.
Oller, who lacks evidence of having contracted SARS-CoV-2 in early 2020, finds it “huge” that a positive test is not necessary in order to receive a lengthy COVID diagnosis. “We were unable to take a test. Long queues were present, and you required symptoms, which I did not possess.
Oller was a dancer and runner prior to COVID. She now believes that the chest pain and breathing difficulties she experienced afterward may have been brought on by microclots in her lungs. She has endured a series of persistent health issues. Oller has acknowledged that she might have to live with certain undesired COVID-19 side effects for the rest of her life, even if many of her problems have improved but not completely disappeared. She had no label for what she was going through at first, and even other medical professionals were skeptical that there was anything genuinely wrong with her.
Oller is one of the founders of the global peer group known as long COVID Physio, which unites individuals with long COVID and their sympathizers. Although she did not participate in the National Academies report, she appreciates the wide definition.
According to Oller, it will be something that patients can provide to their physicians to support their claims. She is aware of some of the challenges faced by medical professionals when diagnosing prolonged COVID. It’s challenging many of our prejudices, which makes it difficult, she says. “We become worse through exercise and worsen through striving more. Accusing the patient and saying, “Oh, you’re not trying,” is simpler. You’re a lethargic person. All you want to do is apply for disability. It’s simpler to just send them along that path rather than reading all of the literature since it’s all in your head.
According to Oller, the term may eventually be expanded to cover subtypes of protracted COVID, in a similar manner to how cancer is classified according to its location and the mutations that lead to it, while cancer is essentially defined as unchecked cell proliferation. On the other hand, she claims that for the time being, beginning broadly will enable patients whose symptoms do not “fit into a nice little package” to have their ailment recognized.
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