It’s common knowledge: Vaccines help protect against COVID-19, especially severe illness and death.
But can vaccines also protect against long COVID? Thousands of people infected by the coronavirus before the arrival of vaccines last spring experienced symptoms lasting weeks or months beyond the initial illness. In many cases, the baffling aftereffects never disappeared. The frightening, often life-altering conditions include chronic fatigue, shortness of breath, vanished sense of smell, muscle weakness, brain fog and even psychosis.
Now, with the highly infectious omicron variant sweeping the Bay Area and COVID cases still rising in some places, understanding whether the vaccine can halt persistent symptoms is critical.
“If everyone’s at risk for long COVID, we’re gonna be in trouble,” said Dr. Steven Deeks, a leader of UCSF’s ongoing study of people with such symptoms. “It’s going to be a huge medical and public health problem.”
The National Institutes of Health has already called long COVID a “public health priority” and estimates that up to a third of infected people have long-term symptoms. The agency is spending $1.15 billion to find out why.
Early research suggests that vaccination is not a surefire way to prevent long COVID. But it seems to help.
One preliminary study of more than 240,000 patients also suggests that the timing of when people get vaccinated can influence whether they win or lose the long COVID lottery. Being inoculated before catching the coronavirus or soon after appears to lower the likelihood of developing long COVID.
But nine months after vaccines became widely available, peer-reviewed data from high-quality, double-blind research studies about their impact on long COVID are still in short supply.
“Am I worried about Long Covid? A little. The literature is a mess,” Dr. Bob Wachter, UCSF’s chief of medicine, tweeted this month. “It seems like vax lowers the risk. So it’s a concern, but there’s not much we can do but wait & see.”
Yet as researchers lay the groundwork for the larger studies destined to come through the pipeline, one peer-reviewed analysis published in September found that being fully vaccinated cut the chance of long COVID in half when compared with unvaccinated people.
“We found that the odds of having symptoms for 28 days or more after post-vaccination infection were approximately halved by having two vaccine doses,” researchers concluded in the study published in September in the Lancet Infectious Diseases.
The study relied on self-reported information, considered a limitation, from 1.2 million adults who participated in the United Kingdom’s COVID Symptom Study. They reported symptoms and vaccination status on a cell phone app.
Researchers found that 31 of 592 fully vaccinated participants with breakthrough infections, or 5.2%, had symptoms for at least a month. By contrast, among unvaccinated people with COVID, about twice that rate — 55 of 482, or 11.4% — had symptoms lasting as long.
Dr. Linda Geng, co-director of Stanford Health Care’s long COVID clinic, called the findings “very encouraging.”
Yet the study’s lead author, Dr. Claire Steves of King’s College London, noted that the vaccine doesn’t reduce long COVID to zero. So “when large numbers of people are affected, there will still be large numbers who unfortunately have long COVID effects,” she told The Chronicle.
Dr. P.J. Utz, an immunologist helping to lead a Stanford study on long COVID, said the fully vaccinated medical students he works with who have had breakthrough infections all emerged from the illness with no lasting problems.
“So that makes me think the vast majority will be perfectly fine,” he said. “But at least a subset of people with breakthrough may have an immune system that is not normal,” leaving open the possibility of long COVID.
Medical equipment at the home of long COVID patient Charlie McCone on Thursday, Jan. 20, 2022, in San Francisco.
Santiago Mejia/The ChronicleA Stanford patient who asked not to be identified is one of them. Fully vaccinated by March, she got a breakthrough case in September when her child, too young to be vaccinated, became infected at school.
Four months later, the 47-year-old health care worker still can’t smell or taste. Her heart races. She has trouble sleeping. Her moods rise and fall. A competitive swimmer before her illness, she can’t ride an exercise bike without becoming exhausted. She has trouble hearing in one ear, and her vision is blurry. She is also plagued by shortness of breath, chronic headaches and frequent abdominal pain. She now works from home.
“My pure, raw feeling is anger,” she said. “We followed the rules, wearing N95 masks” — and getting vaccinated. “You feel helpless because your body is outside of your control. And when you’re a previously healthy individual, that’s a big pill to swallow.”
Possible explanations for the bizarre array of seemingly unconnected symptoms plaguing thousands of people include microscopic blood clots, systemic inflammation and even the body attacking itself with an immune response gone awry — known as autoimmune disorder.
Researchers are investigating all of those, as well as vaccination’s potential role in reducing the problem in the first place.
In November, researchers published a study affirming that the risk of long COVID is lowest among people who get vaccinated before they’re infected — and declines the sooner they get a shot after catching the virus.
The study of 240,648 people’s medical records was published in MedRxiv, a health science journal for preliminary research, and hasn’t been peer-reviewed.
The authors found that people who got their first vaccine dose before getting COVID were 8.8 times less likely than unvaccinated people to experience symptoms lasting three to five months.
People injected within a month after infection were 5.3 times less likely to have persistent symptoms, 3.2 times less likely if they did it within two months, and 2.2 times less likely if they waited for the third month.
Terry Lee (left), a nurse, administers an IV treatment to Charlie McCone at his home, Thursday, Jan. 20, 2022, in San Francisco. McCone tested positive for the novel coronavirus in March 2020 and has had severe symptoms ever since. The IV fluids help treat his lightheadedness, chest pain and other symptoms.
Santiago Mejia/The ChronicleYale immunologist Akiko Iwasaki called the findings striking.
“This study supports the vaccination of people who acquired SARS-CoV-2 within the first four weeks to reduce the risk for long COVID,” she said on Twitter.
If endorsed by experts, the findings would “urge immediate vaccination for all newly symptomatic unvaccinated persons,” said Dr. Richard Parker, an author of the study and chief medical officer with Arcadia, a health data company in Boston. “This would represent a huge and important change in clinical practice.”
The U.S. Centers for Disease Control and Prevention currently urges people with COVID or who test positive without symptoms to delay vaccination until their quarantine period ends.
Deeks of UCSF called the study important but said the data would be more reliable if there were a consistent, widely accepted definition of long COVID. For example, symptoms accepted by the study included not only altered mental state and chest pains but also headache and sore throat.
“If you look in the general population of people who did not get (the virus), you’ll get a certain number who also have headaches, fatigue, hair loss,” he said.
To understand the mysteries of long COVID’s disabling symptoms — who gets them and why — the National Institutes of Health has established RECOVER, a nationwide research consortium involving thousands of patients, hundreds of scientists and dozens of institutions, including UCSF and Stanford.
Meanwhile, thousands of patients have gathered in online support groups. Many are frustrated by the slow pace of research and its lack of focus on treatment.
“It’s infuriating,” said Charlie McCone of San Francisco, who believes he got COVID in March 2020, though he was never tested, and is still so sick that he’s on disability from his job at a nonprofit. At 31, he remains extremely tired, has trouble breathing and suffers from twitching muscles and weakness on his left side. He also has fluctuating blood pressure and a high heart rate.
McCone got a second COVID case in September. His vaccination last spring hasn’t eased his symptoms, and he still has to lie down most of the time.
Terry Lee (left), a nurse, at the home of Charlie McCone on Thursday, Jan. 20, 2022, in San Francisco. McCone tested positive for the novel coronavirus in March 2020 and has had severe symptoms ever since.
Santiago Mejia/The ChronicleHe’s enrolled in a RECOVER clinical trial but said, regretfully, that the trial is for observing participants rather than developing treatments for them.
“A lot of us understand that we are now looking at the possibility of a lifelong disability,” he said. “So if you’re talking about COVID but not talking about long COVID, you’re just not telling the whole story.”
Nanette Asimov is a San Francisco Chronicle staff writer. Email: nasimov@sfchronicle.com Twitter: @NanetteAsimov