*DR NAVA*
*If You’re Suffering After Being Sick With Covid, It’s Not Just in Your Head*
When the influenza pandemic of 1918-19 ended, misery continued.
Many who survived became enervated and depressed. They developed tremors and nervous complications. Similar waves of illness had followed the 1889 pandemic, with one report noting thousands “in debt and unable to work” and another describing people left “pale, listless and full of fears.”
The scientists Oliver Sacks and Joel Vilensky warned in 2005 that a future pandemic could bring waves of illness in its aftermath, noting “a recurring association, since the time of Hippocrates, between influenza epidemics and encephalitis-like diseases” in their wakes.
Then came the Covid-19 pandemic, the worst viral outbreak in a century, and when sufferers complained of serious symptoms that came after they had recovered from their initial illness, they were often told it was all in their head or unrelated to their earlier infection.
It wasn’t until the end of the first year of the pandemic that Congress provided $1.2 billion for the National Institutes of Health, which led to a long Covid research initiative called Recover, in February 2021. A year and a half later, there are few treatments and lengthy delays to get into the small number of long Covid clinics. Frontline medical workers don’t have the clinical guidelines they need, and some are still dismissive about the condition.
Long Covid sufferers who caught the virus early have entered their third year with the condition. Many told me they have lost not just their health but also their jobs and health insurance. They’re running out of savings, treatment options and hope.
To add to their misery — despite centuries of evidence that viral infections can lead later to terrible debilitating conditions — their travails are often dismissed as fantasy or as unworthy of serious concern.
Making matters worse is the general confusion that surrounds what exactly long Covid is. Current definitions are so broad and imprecise that they impede understanding.
The Centers for Disease Control and Prevention defines long Covid as having “a wide range of symptoms that can last more than four weeks or even months after infection.” The World Health Organization sets the line at three months and says symptoms must last “for at least two months and cannot be explained by an alternative diagnosis.” Both highlight fatigue, shortness of breath, cognitive dysfunction, brain fog, pain, digestive symptoms, depression, anxiety, cough, headache and sleep disturbances.
Under the C.D.C. definition, someone with a single symptom just four weeks after illness can be lumped under the long Covid umbrella with someone bedbound for years.
However, it’s been long known that many respiratory illnesses can cause lingering symptoms. One study found that about 30 percent of people with influenza had at least one symptom that would qualify as long Covid in the three and six month period after the acute illness, compared with about 37 percent of those who had Covid.
The symptom descriptions for long Covid are too vague. Do “brain fog” and “fatigue” mean people don’t feel as sharp as they were and are a little off their jogging times, or are they experiencing a cognitive crisis so profound that they cannot find words and are so fatigued that brushing their teeth leaves them unable to get out of bed for the rest of the day? The latter has happened even to some people who had mild bouts of Covid-19.
One of the most important findings is that, as with many other illnesses, the elderly or those already in frail health seem more likely to have ongoing issues, especially if they had severe cases of Covid.
Existing definitions fail to capture the subcategories of long Covid, with different symptom clusters and levels of severity and persistence, creating an obstacle to research and treatments.
A clinical trial that doesn’t differentiate among subcategories could miss signals of promising results that would help one group and not another.
Treatments, too, would differ. Some long Covid patients crash after even limited physical or cognitive effort. Staying within their limits, or pacing, is crucial. However, many told me their primary care physicians would tell them to condition themselves through increased activity. That’s sensible advice for others with mild deconditioning due to lingering symptoms, but it made them feel worse and resist the advice. Some told me that their physicians then saw them as stubborn and lazy.
In addition, if everything is long Covid, then some may suspect nothing is, fueling more mistrust.
In late May the C.D.C. reported that one-fifth of U.S. adults under 65 who had Covid experienced symptoms that “might be attributable” to their previous infection. The administration’s response to such studies didn’t seem to fit the scale of the seeming threat if, indeed, 20 percent of those who have had Covid are at risk for debilitating chronic illness.
We lack proper studies under any definition. So, as with the study that led to the C.D.C.’s long Covid estimates in May, researchers cobble together data from electronic health records, often billing codes, which are standardized diagnostic codes for insurers. It’s already recognized that such databases are too imprecise for research purposes and may be biased because they collect information only on people in the medical system. Making the interpretation even thornier is that if billing codes weren’t in patients’ files before they had Covid and they appeared in the files later, the C.D.C. paper classified them as “might be attributable” to Covid, regardless of what they were.
Plus, some of the science has been truly weak. While poring over that C.D.C. paper, I noticed it didn’t control for prior health status and age between those who were infected and the control group; without that, I don’t even know how to interpret the already muddled results.
Perhaps the best sense of long Covid’s prevalence comes from an ongoing British national survey that asks whether people were experiencing “symptoms more than four weeks after you first had Covid-19 that are not explained by something else.” Unfortunately, it has no control group and likely includes people without Covid who may be suffering from some symptoms tied to a stressful pandemic. Plus, four weeks is not enough time to weed out temporary issues.
However, even with those imperfections, 2.8 percent of those living in Britain in July said they experienced ongoing symptoms they attributed to having had Covid. Encouragingly, those numbers indicated declines over the past few months. However, 2 percent of those living in Britain said those symptoms had affected their day-to-day lives, and 0.6 percent reported that their daily activities had been “limited a lot.”
Just that is a very large number. For the United States, 0.6 percent of the population would mean about two million people potentially facing a debilitating condition, comparable to those expected to be diagnosed with cancer this year. Plus, the prospect of increased medical issues adds another category of concern besides self-reported symptoms.
Given so much evidence about postviral conditions, why wasn’t more done more quickly to address long Covid?
“Medicine doesn’t like what it can’t understand, so it often ignores it,” Ravindra Ganesh, a physician scientist who directs the post-Covid care clinic at Mayo Clinic, told me.
It’s increasingly clear that postviral conditions are key to understanding many illnesses.
People with multiple sclerosis were once told they had a conversion disorder — the historic catchall for “It’s in your head, dear.” Later, advances in imaging allowed cerebral lesions to be seen. Genetic and environmental conditions were later invoked as possible causes. However, this year a multidecade study showed something that was previously met with skepticism: multiple sclerosis follows from infections of the Epstein-Barr virus, sometimes even decades later.
Possible viral causes of cancers were largely scoffed at until 1984 when, armed with advances in genomics, Dr. Harald Zur Hausen tied the human papillomavirus to many cancers. In 2007 a vaccine for the human papillomavirus was approved, which, if everyone got vaccinated, could eliminate about 5 percent of cancer deaths, by my estimate.
Then there’s myalgic encephalomyelitis/chronic fatigue syndrome, an ailment that can leave previously healthy people bedbound and severely limit their physical or cognitive abilities. As many as three-quarters of M.E./C.F.S. patients trace their illness to an infection. But these patients have long been battling neglect and suspicion, with minuscule research devoted to the condition.
Mexico Today USA 