Will a new ‘consensus definition’ help improve care?

The CDC has accepted the NASEM definition, but, as David Cutler, MD, board certified family medicine physician at Providence Saint John’s Health Center in Santa Monica, CA, told Medical News Today that there is still likely to be confusion about testing, diagnosis, and treatment.

According to Cutler:

“The names ‘long COVID,’ or ‘long-haul COVID,’ or [‘post-acute COVID syndrome’] have now all been labeled ‘long COVID.’ And while previous definitions varied depending on whether or not a diagnosed COVID infection preceded the prolonged symptoms, or the symptoms needed to last for 2, 3, or 6 months, or whether shortness of breath, brain fog or exertional fatigue needed to be part of the syndrome, now the definition has been made clearer. But, since no simple diagnostic test exists, it is likely that some controversy will persist regarding precisely who suffers from this condition.”

Steve Allder, MD, a consultant neurologist at Re:Cognition Health, told MNT that the consensus definition would generally lead to “frustration” all around, in part because creating an umbrella-definition for a disease with so many different experiences and symptoms is very complicated.

“It’s complex, it’s truly multi-system; the current system was poorly suited to manage this type of problem prior to [the COVID-19 pandemic]. Since [the COVID-19 pandemic], there is a huge desire to ‘move on’ from COVID,” Allder told us. “There is no simple test, the investigations required are expensive.”

“Since there is no cure for long COVID, the most important treatment remains reassurance,” Cutler opined.

“Patients must be allowed the opportunity to present their symptoms to a receptive physician, they must be thoroughly evaluated to exclude other conditions, the diagnosis of long COVID should then be specifically endorsed, [then] patients need to be informed of the generally favorable long-term prognosis, and adequate follow-up provided,” he advised.

Allder also believed that narrowing a range of symptoms down to one direct cause, often based on a patient’s own statements, can be problematic.

“Major conflicts arise from the fact that current definitions rely mainly on the presence of patient self-reported subjective symptoms. In my experience, the medical profession is highly sceptical of this approach. This is especially true when the number of possible symptoms is high,” Allder said.

“There is huge dispute [around this topic]. Some of this is in the public domain, in journals or interviews given by clinicians. But there is far more on the coalface when patients encounter clinicians in consultations. My personal experience has been [that] most patients receive huge scepticism from the medical profession about long COVID,” he told us.

Speaking of how long COVID currently affects individuals, Allder noted that “[i]t is a total mess.”

“From my perspective of seeing patients, it’s a real problem. It devastates young people’s — and their families’ — lives. But, because the clinical problem overwhelms the already stretched or expensive prevailing systems, medicine and clinicians haven’t been able to rise to the challenge. This is a lose-lose situation,” he told us.

Cutler described the already existing difficulty of diagnosing a disease with up to 200 symptoms, but told us that the NASEM consensus definition is unlikely to simplify things.

“Regarding fatigue, a program of graded exercise to avoid worsening symptoms seems to be best. And since there is no single diagnostic symptom, physical finding or laboratory confirmation, disagreement will persist regarding who has the condition,” Cutler said.

“In addition, there remains controversy over how to best manage the multiple symptoms associated with long COVID. And there is disagreement about when to declare the condition resolved,” he noted.

Moreover, “[f]urther debate persists about whether vaccines reduce the incidence of long COVID,“ he pointed out, while noting that most likely they do.

“[S]ome studies suggest that Paxlovid reduces the incidence of long COVID, while other studies fail to confirm this finding. And a recent study showed reduced incidence of long COVID in overweight patients who took the diabetes drug metformin. But there is no information on the effect of this drug on patients who lack this long COVID risk factor,” cautioned Cutler, suggesting that it remains difficult to provide personalized care when there is still much conflicting information about the disease.