Issue 21.2: Assessing the Problem
Can You Smell That?
The other night, I (Adam) dreamed that I could smell again. Unfortunately, what I was smelling was so unpleasant it woke me up — an intense chemical odor I can describe only as what I imagine would waft up from a bonfire of hundreds of those tear-out perfume inserts that come in glossy magazines. Every time I slipped back into sleep the noxious odor would return. Even now, as I type this, the memory of that acrid smell lingers in my nostrils. But just the memory. Because I still can’t smell anything.
I tested positive for COVID-19 in mid-December. At first, I didn’t think I had any symptoms — no fever, aches, GI distress — but then one day while quarantining I realized that I couldn’t smell my food. Nearly two months later, I still can’t. (Taste, however, doesn’t seem to be an issue.) That phenomenon — called “anosmia” — is among the most frequent symptoms of COVID-19 infection, and also one of the more common symptoms among people who experience Long Covid. As the New York Times magazine recently reported, the COVID-19 pandemic has prompted a massive research endeavor to understand how the new virus affects olfactory perception.
For some people, myself included, the loss of smell is a curiosity, with plusses (think: potty time) and minuses (I need my children to tell me if the garbage stinks). But for others, anosmia can be emotionally devastating and socially alienating. The problem can even be life-threatening for those who live alone (after all, the sense of smell is a critical early warning sign for threats like fire or a gas leak in the home).
I expect my sense of smell to return. Dreaming about odors, I hope, is my brain’s way of telling me that things are on the mend. But it’s possible that for some people, COVID-19 will have robbed them of this fundamental connection to the world.
If you’re struggling with anosmia after a bout with COVID-19 — or for any other reason — you can find support at AbScent, a Facebook group dedicated to people with this condition.
What’s the Number?
Take a look at the scientific literature about Long Covid and you’ll be struck by one thing: Estimates of the problem vary widely. It seems medical science has yet to come up with an accepted estimate of the number of long-haul sufferers. Back in July, the CDC – the Centers for Disease Control and Prevention – estimated that about a third of patients had long-term illness. That number, which seemed high at the time, alarmed health care practitioners, but it served as confirmation for the growing population of patients who were experiencing symptoms of Long Covid.
Just last December, however, the U.K.’s Office of National Statistics, found the prevalence of Long Covid symptoms in those who had tested positive for the infection at least five weeks earlier was about 20% weeks or longer, and about 10% at 12 weeks or longer. Those estimates are significantly lower than the CDC’s.
An estimate of Long Covid that was greater than our CDC’s was found in the region of Western Australia. The Australian National Phenome Centre found that about 50% of infected patients still reported at least one symptom six months after being infected.
The largest prevalence we could find is from a recent meta-analysis from Houston Methodist Research Institute. (A meta-analysis is a study that combines the results from many other previous studies. One benefit of this approach is vastly greater subject numbers from whom to gather data and reach conclusions.) The results have yet to undergo peer review, so are subject to revision — or even rejection entirely — but as researcher Sonia Villapol, PhD, told MedPage Today, "We estimated that a total of 80% of the patients infected with SARS-CoV-2 [the virus that causes COVID-19] developed one or more long-term symptoms. Preventive measures, rehabilitation techniques, and clinical management strategies designed to address prevalent long-term effects of COVID-19 are urgently needed.”
For those interested, here’s a link to an informative podcast from PBS that discusses Long Covid with three patients and an expert, the latter of whom notes the wide disparity in estimates and the lack of a test to confirm the disorder. At this point, we have many more questions than answers when it comes to Long Covid.
Our Take:
So, a third, a fifth, a tenth, half, four-fifths … Which of these, if any, is closest to the truth? Might the difference in percentages be related to where these studies were done? Yes, definitely. And the studies that were conducted were not designed in the same way, so in some sense the comparisons are apples to oranges here. Even so, a vague but necessary conclusion emerges: No matter which way you slice the data, Long Covid exists at significant levels. With 106 million cases of COVID-19 worldwide and counting, even the lowest estimate — a tenth — means as many as about 11 million people globally will experience, or already are in the midst of, Long Covid.
The problem requires medical resources, of course, but also sociological attention. Sufferers of Long Covid may not be able to make it to work as regularly as before. Are these people going to be fired, given time off to recover, offered financial assistance from their company or government, or lost in our health care bureaucracy? The effects of Long Covid on the workforce have yet to be addressed, but these questions will gain immediacy as the months go by.
And don’t forget: We want to hear from patients, physicians and other health professionals to find out what they are thinking. Have a question for us that we might ask an expert? Email us at longcovid@mcmahonmed.com.
Quotation(s) of the Week:
“We used to say TB, sarcoid, and syphilis were the three conditions that could give you just about anything, and I think Covid can [too]. It can give you just about every symptom in the book.”
Trisha Greenhalgh, professor of primary care health sciences, Nuffield Department of Primary Care Health Sciences, Oxford, as noted in a British Medical Journal [JP6] podcast, entitled “What Do We Know About Long Covid.”
“Given the sheer number of people worldwide who have had COVID-19 …, if even 1% experience symptoms beyond three months, that is a huge number of patients who need help. For some patients, we are the first physicians they've seen in person since their diagnosis. Even if we don't have all the answers right now, it puts many of our patients at ease to speak with an expert and get a complete evaluation."
Catherine Lee, MD, co-director of the Cedars-Sinai COVID-19 Recovery Program, in Los Angeles.
News of the Week:
An investigation by the World Health Organization concluded that the SARS-CoV-2 virus which causes COVID-19 almost certainly did not leak from a lab but rather emerged naturally. Although much of the attention for the origin of the COVID-19 pandemic has focused on Wuhan, China, where cases began appearing in December 2019, scientists in Italy also claim to have identified at least one case of the infection as early as November 2019 — suggesting the disease may have had roots in multiple countries.
That the origin story for SARS-CoV-2 has gaps is unsurprising and by no means indicates anything suspicious. Tracing the history of viruses is not easy work. After all, it took HIV researchers several decades to establish that the pathogen — which causes AIDS — appears to have emerged from Africa in the 1920s.
Datapoint of the Week:
172
That’s the number of Long Covid symptoms reported by British residents and published in the UK’s Sun (not what we would call the most medically astute publication). The catalogue includes everything from fatigue, which is a well-established symptom, to “sensitivity in the head,” which we are still trying to decipher. Nonetheless, we have found that many of the symptoms listed here can be found in other lists. As such, it is worth a read.
Tweet of the Week:
For this issue, instead of a tweet we suggest a few Long Covid-related experts or advocates to follow on Twitter:
Paul Garner, infectious disease doctor with Long Covid
Hannah Davis, researcher with the Body Politic
Dr. Nisreen Alwan, epidemiologist with Long Covid
Dona Kim Murphey, MD PhD, neuroscientist with Long Covid
Ed Yong, journalist covering Long Covid (and the pandemic in general) for the Atlantic magazine.
Fiona Lowenstein, founder of Body Politic, Long Covid patient and journalist
And while we are at it, here’s a Long Covid support group, mentioned above, that is worth exploring: We Are Body Politic.
Homework:
Everyone would agree more study is needed to unravel the puzzle of Long Covid. Well, here’s your chance to help with that effort. UCLA has announced a recruitment drive for a Long Covid study they are setting up. The study is national, not limited to the Los Angeles area, denying you an excuse to not sign up. Let’s push the science on this everyone and sign up for this important study!
Long Covid
"Sensitivity in the head" reminds me of the mysterious ailment, "stagnation at lung" which a farmer insists is the cause of death of his cattle in a James Herriot story.