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America: What’s Wrong With the National Academies’ Long Covid Definition?

The National Academies of Sciences, Engineering, and Medicine has just proposed a new case definition for Long Covid. In practical terms, this ensures that the criteria have good sensitivity, meaning that everyone who has Long Covid will probably be included. That's good news for making certain that struggling patients are not left behind. However, the specificity is rather poor, which translates into inaccurately diagnosing many who do not have Long Covid. This has implications for medical billing, disability benefits, and social accommodations, not to mention the consequences that can come from slapping a chronic illness label on a patient.

By Professor Leonard Jason, Medpage Today, 14 June 2024

Article Extracts

Overly Broad Criteria

Here is the problem: a person can meet these proposed Long Covid criteria by merely having one symptom that is not a burden to the person or does not have any negative impact on the person's functioning. If a person has trivial pain in the toe for 3 months following COVID infection, with no negative consequences to the person's functioning or quality of life, that person would still be eligible for a Long Covid diagnosis. The failure to list any thresholds of frequency or severity of symptoms, so that the symptoms are not trivial, has major consequences for an infection that is as widespread as COVID…

The Implications

So, if the vast majority of citizens are eligible for a Long Covid diagnosis given their prior infection, and the threshold criteria for being diagnosed is so minimal, then it is possible that the prevalence of Long Covid could increase exponentially… There will be a wide-ranging impact of this new case definition, because it will be used with billing codes (e.g., ICD codes) in an outpatient or inpatient setting, as well as for other purposes from school or workplace accommodations to disability benefits (amid dwindling Social Security dollars).

In addition, the authors note that their recommendation may need to be “updated in no more than 3 years' time.” But the last time (2015) the National Academies made a recommendation for a reconvening of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) case definition group within 5 years, it never occurred. Given this track record of failure to reconvene and reassess, will a similar fate occur with Long Covid?

We must learn from past experiences with other post-viral illnesses. Patients with ME/CFS have had to endure the losses of a debilitating illness and then be re-traumatized by the reaction of healthcare workers, friends, and even family members to their disease. This is due, in part, to an empathy breakdown causing stigma. Because 20% of the general population experiences fatigue, many feel their experience of illness is comparable to ME/CFS; so, an unwitting conscious or unconscious bias is that if they can cope with fatigue, why can't those with ME/CFS?

These attitudes trivialize the experience of ME/CFS, because garden-variety fatigue is not debilitating ME/CFS. Of note, 95% of individuals seeking medical treatment for ME/CFS report feelings of estrangement; 90% of patients with ME/CFS report delegitimizing experiences by physicians; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to take care of them.

We must do all we can to avoid such trauma for patients with Long Covid.

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