DON'T CALL US `RECOVERED'

COVID LONG-HAULERS SAY THEY ARE CONTINUING TO SUFFER ALL THE WHILE OFFICIAL STATISTICS ARE IGNORING THEM

Just shy of 800,000 people in Canada, according to official reports, have “recovered” from COVID-19. What the statistic ignores is the number still dealing with miserable symptoms, months out.

Now, as Canadian doctors help lead international efforts to reach a global consensus on what, precisely, is “long COVID,” patient groups are lobbying to have the phenomenon incorporated into Health Canada's daily COVID-19 statistics and “recovered” cases renamed “non-infectious.”

“A large percentage of this cohort of `recovered' people are still suffering, and calling them `recovered' is inaccurate, misleading and insensitive,” said Susie Goulding, founder of COVID Long-Haulers Support Group Canada. “We need to start counting long-haul COVID cases.”

Nearly one year into the pandemic, the lingering effects of COVID-19 are coming into focus. While most infections are mild and short-lived, growing numbers of people are reporting a bewildering array of symptoms, including breathlessness, exhaustion, tingling throughout the body, anxiety, brain fog and memory problems, weeks or months after what, in many cases, seemed like a mild infection.

According to Health Canada, a person is considered “recovered” from COVID-19 after at least 10 days have passed since symptoms started (meaning the infectious period of COVID-19 has passed), “their symptoms have improved (even if not fully resolved),” and the person no longer has a fever.

“The Government of Canada is increasingly adopting the term `resolved' … as this better describes the public health implications of the case status,” the department said in an email to the National Post, “while allowing for the fact that the individual may not be recovered in terms of symptoms or longer-term health effects.”

The provinces and territories have their own definitions of “recovered.” But whether recovered or resolved, the use of either term suggests the matter is neatly settled, Goulding said. “It's a white wash that conceals the fact that a large percentage of people are not recovering in 14 days. We are not recognized and there seems to be no real urgency in dealing with us.”

The syndrome needs to be formally named and defined so people can be properly diagnosed and eligible for medical and financial support, said Goulding.

Before decisions can be made about prioritizing a disease and mobilizing resources against it, “you actually have to be able to define it,” said Dr. John Marshall, a trauma surgeon at St. Michael's Hospital in Toronto. As reported by the Canadian Medical Association Journal, Marshall recently co-chaired a World Health Organization group developing criteria for a working diagnosis for what the WHO now calls the “Post COVID-19 condition.”

“The first step is going to be to say, OK, what precisely is this long COVID syndrome we're talking about? Are there actually several different conditions, or a single condition?” said Marshall. What's the epidemiology — how common are the different symptoms? How many who've had COVID get it? Are there risk factors for acquiring it?

One web-based survey by British and U.S. researchers involving more than 3,700 people who had suspected or confirmed COVID-19 lasting more than 28 days tallied 205 symptoms in 10 organ systems. In a study published this week in JAMA Network Open involving 177 people with lab-confirmed COVID-19, one-third had lingering symptoms lasting a median of six months, even among people who experienced mild illness.

Daniel Altmann, a professor of immunology at Imperial College London, has estimated that the number of people affected by long COVID in the U.K. “is roughly equivalent” to the number with rheumatoid arthritis, which in Canada, would be about 300,000 people.

Writing in the British Medical Journal, Altmann and Rosemary Boyton said at least 10 per cent of people with symptomatic COVID-19 have symptoms that don't resolve over subsequent months, and that infection can leave a “lingering trail” of changes visible on CT scans of the lungs. The virus attacks the same receptors in the heart, causing inflammation of the heart muscle.

“What's really interesting to me about long COVID is that it's clearly different from the consequence of simply having been gravely ill,” said Marshall, a professor of surgery at the University of Toronto. Research suggests only eight per cent of people with long COVID have been hospitalized.

Some studies suggest SARS-CoV-2 virus can persist in the liver and spleen. Gastrointestinal biopsies taken four months after an infection “show persistent live virus in about a third of individuals,” Altmann and Boyton wrote. Is it just that people haven't cleared the virus? Marshall's gut tells him the bulk of cases may be consistent with an autoimmune disorder caused by the body's widespread inflammatory response to the virus.

Changing “recovered” to “non infectious” is a “great suggestion,” Marshall said.

COURTESY SUSIE GOULDING Susie Goulding, here with son Keisen Hernandez, has created a Facebook support page for Canadians experiencing lingering symptoms of COVID. Goulding developed symptoms in March and says she's still experiencing fatigue, brain fog and other problems. “We're being forced to start selling homes and other assets,” she says of long-haulers. “I haven't had benefits since before Christmas.”