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The Rising Number of Long COVID Sufferers Are Desperate

"Part of the challenge with treating and managing people with long COVID is that a lot of them had been very healthy, very high-functioning. This syndrome has significantly impacted their day-to-day living and how they function with their jobs."

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(TNS) - NORTH KINGSTOWN — "Pretty much everything hurts," says Shannon Maynard. "I have pain in my back and my neck and all of my muscles, every day."

Maynard is also chronically tired. She experiences persistent headaches and encounters difficulty concentrating for long periods of times. She sometimes becomes dizzy, and there are occasions when she has trouble retrieving words.

This has been Maynard's life since the summer, when she contracted coronavirus disease and then began to experience the symptoms of long COVID, a post-acute sickness syndrome that afflicts millions of Americans, has an uncertain prognosis, and remains mysterious in many ways, despite a growing body of research.

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"I try to take it one day at a time and just try to take care of myself," Maynard said. "I don't really go out a heck of a lot; I'm pretty much in my home every day unless I have a doctor's appointment. I try not to overcomplicate things that I can do in a more convenient way," making purchases online instead of visiting a store, for example.

Her husband, Paul, provides support, but there is an additional complication for them both: James, their 10-year-old son, also contracted coronavirus disease, and he, too, is living with long COVID, although his symptoms are not as severe as his mother's.

Still, he often cannot last the school day.

"When he isn't feeling well, he makes it through a half day and then the nurse calls me because he develops a stomachache and a headache and a sore throat" and he must come home, Maynard said. "Eleven-thirty is like the 'magic window.' If he makes it past 11:30, he usually can make it through the whole school day."

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Maynard holds a master's degree in adult education from the University of Rhode Island, and until contracting COVID, she worked full-time as a training and curriculum specialist for the Navy's childcare center in Middletown. Today, she is able to work part-time remotely. When she might return to full-time is an open question.

The answer potentially may emerge from Lifespan's Long COVID Clinic in Providence, where Maynard is an outpatient.

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"Part of the challenge with treating and managing people with long COVID is that a lot of them had previously been very healthy, very high-functioning," clinic director Dr. Jennie E. Johnson told The Journal. "This syndrome has significantly impacted their day-to-day living and how they function with their jobs."

Johnson is not Maynard's physician. But with approximately 500 people seen at the Lifespan clinic since it opened in late 2020, she speaks with expertise when she states that long COVID does not discriminate. (The state Health Department as yet does not track cases.)

"We know that you don't have to have been hospitalized for COVID to develop persistent symptoms," Johnson said. "Some people were asymptomatic or minimally symptomatic at the time that they were tested who then went on to develop long COVID.

"And there also doesn't seem to be a specific phenotype, meaning there are not people in a certain age group who are more likely to get it, or people with certain comorbidities like diabetes or hypertension or something that we can point to and say, 'You're at higher risk for it.' So it can affect people of all ages, of all health statuses."

And it can affect people like Maynard, who contracted COVID despite being vaccinated.

"We still don't really have a great understanding as to why people develop persistent symptoms," Johnson said. "Some may be due to direct organ damage from the virus, which we often see in patients who are hospitalized and then discharged."

Maynard, however, was not hospitalized and thus falls into the category of people for whom "we still don't really have a good understanding of why their symptoms occur and persist," Johnson said.

New Brown study will assess broad impact of long COVID

Solid data is key in the fight against long COVID, but gathering it is compounded by the very nature of the syndrome. With so many varied possible symptoms, some cases are not diagnosed. And unlike for coronavirus disease itself, there is no test.

None of this is thwarting Brown University's School of Public Health, which is embarking on a study designed to assess the broad impact of the syndrome.

"What we're trying to do is really put our arms around the impact that long COVID is having on our society," said Dr. Ashish Jha, dean of the school. "It's less about the clinical physiology of what's going on or therapies, but much more about what the impact is on patients, on clinicians, on the health system, on businesses.

"Really taking that societal perspective to try to identify what the policy things are we need to do to manage what I suspect will be tens of millions of Americans who will have anywhere between very, very mild disability to some number who will end up having very significant disability."

Supported in part by a grant from Hassenfeld Family Initiatives, which is headed by former Hasbro CEO and chairman Alan G. Hassenfeld, the Brown study will include surveys of patients and others. "And then we're holding a series of stakeholder meetings with policymakers, with business leaders, with patients and doctors to really hear from them directly," Jha said.

Preliminary findings are expected to be available by the spring, the dean said. While the study will be national in scope, there will be an emphasis on Rhode Island, Jha added.

According to Jha, in America, "probably 140 million to 150 million people have been infected with this virus by now, even though the official numbers are more like 40 million." The global numbers are much higher.

Estimates of how many survivors will experience some degree of long-haul symptoms vary widely, from about 10% to 35% or more.

"Even if it's 10%, then that's 14 million" Americans who will be afflicted, Jha said. "Even if it's 5%, that's 7 million. That's a lot of people."

Vaccines can help alleviate symptoms

Dr. Rebecca Brown, associate director of Roger Williams Medical Center's division of geriatric and palliative medicine, finds hope in vaccines, which are highly successful in preventing people from contracting COVID and reducing severity and hospitalizations of that small percent, like Shannon Maynard, who do.

"The most important thing is for everybody to get vaccinated," Brown told The Journal. "I cannot stress enough for people to get boosted, for people to get their families vaccinated. Vaccination has made the biggest difference of anything to prevent long-hauler COVID."

Vaccines can also alleviate some of the symptoms of the syndrome once a person is experiencing them, Brown said.

"Some of my people got Moderna and some of them got Johnson & Johnson and some of them got Pfizer, but the vaccine really helped with long-hauler COVID," Brown said. "It really did."

Dead ends and detours on road to recovery

In her quest for health, Maynard has undertaken a long journey.

"I've gone to my primary care doctor with printouts from medical journal articles saying, 'What do you think about this?'" Maynard said. "Because he doesn't really have any idea what to do for me, either. It's really ruling out things as they come up.

"We started trying to treat the headaches with different medications. And then when I started having episodes with heart palpitations, they had me wear a heart monitor for a week and sent me to the cardiologist. I've been to see my endocrinologist to try to see if it's something related to like my thyroid system.

"I can't tell you how many rounds of blood work I've had trying to look at everything possible to see what might be causing the symptoms I'm having, but pretty much everything so far has come back inconclusive." she said. "There's nothing that points at 'this is what's wrong' that they can treat. The most frustrating thing is I don't know when it's going to end."

Maynard praised the Navy for its help.

"My employer's been really, really understanding and really great about doing everything that they can to help me, letting me work as many hours as I can from home, doing telework."

And some of her co-workers have donated some of their leave time to her, she said, "so I can have some pay coming in. My husband works full time, but it's challenging to budget on one income" for a family of four. She and her husband, Paul, who works at Sodco, have another child, Juliana, age 9.

"One really reassuring thing that the Long COVID Clinic has done for me is they've been treating people now for over a year and they said they are seeing a consistent improvement in people's symptoms over time," Maynard said. "So that makes me feel hopeful."

So, too, is evidence that booster shots have helped move some toward recovery — as do first shots for long-haulers who were not vaccinated.

One of them is her son James, who was not eligible to get a first shot when he contracted the disease, but who did so in early November, when children age 5 to 11 got the green light.

"I'm hopeful for my son, who just got his first dose of the vaccine the other day, that that's going to help him out," Maynard said.

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