Rheumatology perspective: Will NASEM’s new long COVID definition aid diagnosis, treatment?
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On June 11, the National Academies of Sciences, Engineering and Medicine issued the result of their lengthy deliberations to develop a consensus definition for long COVID.
The undertaking, initiated at the request of HHS Secretary Xavier Becerra’s office, was massive and conducted by an august body of highly qualified individuals from varying quarters, including multiple specialties of clinical care, basic and translational science, and advocacy. Their goal: draft a definition of long COVID that could be applied for broad uses, including clinical care, research, public health, the pharmaceutical industry, payers and other stakeholders.
Given my investment in following and working in the long COVID space, I can assure you this was a herculean task and, regardless of any criticisms rendered, they deserve and get my thanks for their dedication and efforts. However, for now, I want to give my first 30,000-foot view of the definition and share some concerns. In anticipation of writing this editorial, I have discussed this definition with numerous colleagues also working in the long COVID space, and I think my viewpoint on this is not extreme. The full definition is found in the accompanying sidebar. I urge you to read it if you have not already.
To begin, I have commented publicly that for a condition that appears so highly heterogeneous, the absence of a uniform, broadly accepted definition has been rate limiting for critically interpreting comparative studies across basic, translational and clinical research.
Furthermore, a workable definition that can serve to guide diagnosis has also been desperately needed among clinicians. I still have no confidence in studies that have been based on case finding via the current ICD code for long COVID without a broadly accepted case definition.
Now enter the newly proposed NASEM definition, which is, if nothing else, extraordinarily broad and accommodative of myriad possible symptoms. Supported by a patient-driven survey that is frequently referenced, the committee suggests that there maybe/are more than 200 symptoms associated with long COVID. I personally think for now it is impossible to ascertain what the boundaries are on long COVID-associated symptoms. I believe the same goes for our ability to differentiate and separate the post-2020 prevalence of many, if not most, of these symptoms with their well-documented prevalence in the community at large dating to the pre-pandemic era.
To be clear, such criticism relates to biologic attribution and medical nosology, and does not and should not diminish or negate the suffering of those experiencing new-onset symptoms in the post COVID-19 period, regardless of causality.
On a point of agreement, I endorse the proposal requiring a 3-month length of illness to qualify as long COVID, which seems reasonable based on the documented trajectory for improvement noted in the vast majority of patients recovering from acute COVID-19.
That said, the definition does not place a limit on how long after the acute infection the development of new symptoms must occur to qualify as long COVID, which to me is a weakness that increases the sensitivity and decreases the specificity of the diagnosis. For example, could a significant sleep disturbance developed 4 to 6 months after recovering from COVID, which comes and goes over the next 6 months, be described as a long COVID complication?
However, perhaps the most concerning component of this definition states that, in addition to demonstrating any one of a vast array of symptoms for 3 months, patients with long COVID may present with single or multiple diagnosable conditions. These conditions include — and I agree with this part — such well described post-acute infection syndromes as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), POTS and fibromyalgia. Hoewever, I was surprised to see it also explicitly include, by name, a number of rheumatologic disorders such as lupus, rheumatoid arthritis and Sjögren’s syndrome.
Does this mean — and perhaps the authors can clarify — if a patient develops lupus 3, 6 or 9 months after COVID-19, that this is a basis for a long COVID diagnosis? This is confusing to me, as it is estimated that during the previous 4 years, 80% to 90% of the U.S. population has had COVID-19, making it challenging to identify autoimmune diseases diagnosed during this period either as post-infectious sequelae or arising de novo.
I await clarification on this, but after reading the entire 242-page publication, I am still uncertain how to interpret and apply this highly sensitive definition in rheumatologic practice or research. As the committee sates, however, they expect it to be refined and modified as data are generated.
For now, the case definition is extremely broad. Without tweaking it — and I believe the committee suggests that researchers do tweak it — such a case definition is extremely weak in its current form for comparative research. For clinicians, it is extremely broad and will allow disease classification for a wide range of clinical signs, symptoms and medical problems. For patients, meanwhile, I think the case definition is easy to understand and broadly accommodative.
I am critically reviewing this area for a presentation at ACR Convergence 2024 and would love to hear your thoughts. That is my take on the new definition for long COVID. What’s yours? Please share your thoughts with me at calabrl@ccf.org or at rheumatology@healio.com.
- References:
- “A Long COVID Definition: A Chronic, Systemic Disease State with Profound Consequences,” National Academies of Sciences, Engineering, and Medicine; Published June 11, 2024; Accessed June 11, 2024. https://nap.nationalacademies.org/catalog/27768/a-long-covid-definition-a-chronic-systemic-disease-state-with.
- Barsky AJ, Silbersweig DA. J Gen Intern Med. 2023;doi:10.1007/s11606-022-07699-8.
- For more information:
- Leonard H. Calabrese, DO, is the Chief Medical Editor, Healio Rheumatology, and Professor of Medicine, Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, and RJ Fasenmyer Chair of Clinical Immunology at the Cleveland Clinic.
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