'this stuff is real': covid-19 symptoms can linger for months, long haulers say

goulding was eventually tested, more than two months after she stared feeling ill, w hen an emergency doctor told her it looked like covid . it came back negative. however, j ohns hopkins researchers have noted that early testing is crucial, that by day 21 of being infected, the chance of a false negative result — when a virus isn’t detected in someone who actually is or recently was infected — is 66 per cent. still, goulding has met with the attitude, “if your test was negative, then what are you complaining about?”

according to the public health agency of canada, nearly 72,000 canadians have recovered from covid-19. but for some, recovery means arms and legs “permanently fizzing as if injected with szechuan peppercorn,” dr. paul garner , a professor of infectious diseases at liverpool school of tropical medicine blogged in the british medical journal. other widely reported symptoms include mind-numbing fatigue, profuse sweating, muscle aches and joint pain, gastrointestinal complaints, bubbling, burning feelings in the chest, pounding headaches, skin rashes and a shortness of breath that can leave people unable to blurt out a full sentence after walking up a slightly-sloped driveway.

thousands of long-haulers are sharing symptoms on online support groups. (goulding recently created a facebook page — long haulers support group canada. ) i n a recent open letter, members of longhaulcovidcanada urged federal and provincial chief public health officers to commit to research and support for people experiencing covid-19 symptoms that last long after the “tidy” two weeks the official guidelines say mild cases take.

“many of us have had cases that did not require hospitalization and yet we are having persistent symptoms three, four, even five months after symptom onset,” their appeal reads. some doctors have been supportive, many more dismissive.  people have been told their problem is anxiety, that they’re “milking it,” wrote garner , who wasn’t certain he had covid-19 until he spilled bleach on his hands and couldn’t smell the chlorine. this isn’t some post-viral fatigue syndrome, garner said. “this stuff is real. these people are trying to navigate an illness that bites back like a demon if you overdo it, batters you physically and mentally, and leads you to doubt your own sanity.”

a research letter published this week in jama bolsters their case . the study of 143 people hospitalized with covid-19  found that 87 per cent reported having at least one lingering symptom — fatigue and shortness of breath in particular, but also chest and joint pain, 60 days after first becoming sick. only 12 per cent were completely free of any covid-19 related symptoms; 44 per cent reported a “worsened quality of life.”

in one study of 109 people hospitalized in toronto with acute respiratory distress syndrome, or ards , even relatively young people had “persistent exercise limitations and reduced quality of life” five years later, herridge and colleagues reported in the new england journal of medicine.

in an another study of 117 sars-1 survivors from toronto , 17 per cent had not returned to work by one year, 51 people required 668 visits to psychiatrists or psychologists, and their caregivers also reported a significant drop in mental well-being.

“we’ve had five cases of patients who’ve had to have their gut removed,” massachusetts general hospital infectious diseases physician dr. rochelle walensky told stat . “you see these cases and you say, wait a minute, the virus is doing this, too?”

more difficult to explain are the symptoms being reported by people who weren’t critically ill: dizziness, trouble sleeping, ringing in the ears. “it’s been 3 months since recovering. now my hair is falling out, is anyone else experiencing this joyful crap?” one woman posted on the 72,000 member survivors corps facebook page.