It’s been 4 years since COVID hit Michigan. For Long COVID patients, the pandemic isn’t over. Michigan Advance – Michigan Advance

Four years have passed since Gov. Gretchen Whitmer declared a state of emergency to address the COVID-19 pandemic on March 10, 2020. But the disease remains more than a memory, especially for those whose lives are continually impacted by the illness.

Robert McCann, 46, was exposed to COVID-19 at a Lansing-area veterinary clinic which was tied to an outbreak of the disease in June 2020. About a day after testing positive, McCann, the executive director of the K-12 Alliance of Michigan, said he started to feel sick.

At the time, it wasnt anything, like, horrible and the symptoms went away probably after a week or so, McCann said. I figured, OK, that wasnt too bad, Ive moved on.

In the fall, McCanns symptoms returned and persisted, despite testing negative for the illness. More than three and a half years later, McCann says he still faces issues with severe fatigue, nerve pain and brain fog from Long COVID.

Overall, you know, I consider myself one of the more fortunate ones, McCann said.

Theres days I struggle a little more than others to be sure, but you know, Im able to function reasonably well the majority of the time and theres people out there that arent, McCann said.

But describing his fatigue symptoms to others has proved difficult.

Theres a connotation there, or at least that you worry about sometimes, that people just think youre lazy, McCann said.

There are nights where I will be so tired that I will sleep for 15 hours, and I still cant wake up in the morning. Just I have no energy and its hard to really describe that to people, McCann said. There are days where its hard to do your job. Theres days where its hard to, you know, do the things you enjoy doing.

Prior to developing Long COVID, McCann said hed done quite a bit of traveling and hiking.

Ive been fortunate to kind of get all over the world, he said. In like 2019, I did a hike through the Austrian Alps that was pretty astonishing, quite frankly.

Im still fortunate that I can do some of that, but there are days where its like, yeah, thats not going to happen today, McCann said.

As far as seeking solutions for Long COVID, You name it. Ive probably tried it, McCann said. From clinical treatments, to supplements to prescription medication, none have had a major impact on his condition.

While McCann has received his COVID-19 vaccine and boosters, he said it has not helped relieve his symptoms in the way others with Long COVID have reported.

There are some people that do seem to have found some relief from that from various things, and Im certainly glad to see that. But for me, it just wasnt the case, McCann said.

According to the World Health Organization, there have been more than 7 million reported deaths worldwide from COVID-19 since Dec. 31, 2019, with 1.2 million deaths in the United States. As of March 5, Michigan has reported 44,654 deaths from the disease.

Vaccines became widely available by spring 2021, and now 70% of the Michigan population is fully vaccinated, the same as the U.S. rate.

Visible signs of the pandemic have all but disappeared. Its been almost three years since Whitmer removed capacity limits on indoor and outdoors events and ended the states masking requirement in June 2021.

And thankfully, the number of COVID deaths has been ramping down. Although the state recorded more than 9,000 deaths among confirmed cases of COVID-19 in 2022, that number dropped to just over 2,300 in 2023.

But while the World Health Organization declared an end to the global emergency posed by the virus on May 5, 2023, the body noted this does not mean the pandemic is over.

Long COVID continues to present challenges for medical professionals working to treat the condition, despite breakthroughs in vaccines and antiviral medications since the pandemic began. An August 2022 Brookings Institution report, which analyzed Census Bureau survey information, estimated that 16 million people of working age in the U.S. suffer from Long COVID.

Arianna Perra, a psychologist for Mary Free Bed at Munson Healthcare in Traverse City who leads a Long COVID recovery group, said the tricky thing about treating the condition is that it has around 200 documented symptoms.

Everyones profile is slightly different. The most common ones that we see in the COVID rehab setting and psychology setting are related to fatigue and brain fog, like cognitive dysfunction, Perra said.

According to an article published in Nature Reviews Microbiology, many Long COVID patients experience dozens of symptoms across multiple organ systems. The condition also encompasses a number of adverse outcomes, with common new-onset conditions including Type 2 diabetes, myalgic encephalomyelitis/chronic fatigue syndrome, cardiovascular, thrombotic and cerebrovascular disease and dysautonomia, particularly POTS, a condition that can cause a fast heart rate, dizziness and fatigue while transitioning from laying down to standing up.

A 2024 University of Michigan study also found that individuals with a chronic overlapping pain condition were at greater risk for developing Long COVID conditions.

According to the National Institutes of Health (NIH), individuals who experienced severe illness from COVID-19, people who experienced multisystem inflammatory syndrome during or after their illness, and people with underlying health conditions like diabetes, asthma, autoimmune diseases or obesity are more likely to develop Long COVID. Women, people of color, sexual and gender minorities and people without college degrees are also more likely to have Long COVID.

Studies have also found that the COVID-19 vaccine dramatically lowers the risk of developing Long COVID.

In treating Long COVID, Megan Jabin, an occupational therapist for Mary Free Bed, emphasized the importance of a multidisciplinary approach.

Even if maybe the patient is coming in and then only, originally, has a referral for physical therapy, the other disciplines are always looking out for can we have speech therapy or occupational therapy or psychology involved based on what the patients main concerns are, based on what their goals are, and what their symptoms are, Jabin said.

While every Long COVID patient presents symptoms differently, one of the main attributes is that patients are often deconditioned, have a difficult time maintaining their stamina and have overall weakness, Jabin said.

In a multidisciplinary treatment, physical therapists will usually focus on strengthening and endurance as it relates to a patients mobility, while a speech-language pathologist will focus on cognition and brain fog and memory issues. An occupational therapist will focus more on helping patients achieve their day to day independence including dressing, bathing and grocery shopping, Jabin said. In some cases, getting back to driving has also been an issue.

All of these disciplines, including psychology, work together, especially when a patient is more receptive to a particular treatment, or education from their therapists, Jabin said.

For psychological treatment, Perra said Long COVID is approached from a rehabilitation perspective similar to treatment for a stroke or a major car accident.

That also includes helping patients who may be frustrated with the lifestyle changes included as part of their treatment.

Figuring out how to pace is a really important part of the rehab process. And that is tackled with [physical therapy], right, so figuring out how to find the right dose of movement so that we can get stronger and build our tolerance for exercise and our energy stores, Perra said.

From a psychological perspective, how do I deal with the fact that I might be really annoyed or irritated that I have to pace myself, or I might fall into the trap of thinking, Well, Ill just push myself through it and then Ill deal with it later, and then being in an extreme amount of fatigue and being down for the count for a few days also impacts my mental health and my relationships with other people, Perra added.

Its not just finding the right dose of movement to help people build their strength and stamina. Addressing barriers and thought processes, and looking at how treatment can impact relationships with others, and how to receive support from people when a patient may need to rest, Perra said.

The hardest thing about making any behavioral change is not the act. It is what is between our ears, right? Its our cognitive processes, its our expectations, assumptions, predictions, how we compare ourselves to our pre-COVID lives. And so psychology has a lot of skills to be able to recognize when were caught in unhelpful loops and to manage that, Perra said.

When treating brain fog, treatment focuses on strategies to address sympathetic nervous system responses, Perra said.

A lot of folks were told or given the message that it can't be that bad, or it's all in your head or you know, I had COVID too and I recovered just fine. So I think there's a lot of folks that were coming to our program feeling like they weren't believed.

Arianna Perra, psychologist for Mary Free Bed at Munson Healthcare in Traverse City

Were understanding more and more about how the nervous system is affected by COVID in the long run. Its not just that people are anxious, right? This isnt caused by anxiety. There are functional changes in how our body regulates itself. So learning strategies to downshift, how to stimulate our rest and digest response, those are really specific health psychology strategies we can learn, Perra said.

One of the most effective ways someone can counteract their bodys stress response is through controlling the rate and rhythm of their breath through breathing exercises and learning how to decrease muscle tension, Perra said.

The life-changing nature of Long COVID can also bring mental health symptoms, Perra said. Depression is fairly common in patients, as well as anxiety, in regard to symptoms getting worse or being reexposed to COVID-19.

Its also not uncommon to see traumatic responses from being hospitalized or from the active illness phase, Perra said.

From a mental health perspective, not only are we sort of mourning the loss of the life we thought we would have, at this point after COVID were also dealing with some of the mood changes, sleep changes, how we think about things changes. So psychology is an integral part to that treatment plan, Perra said.

How Long COVID has become the silent pandemic

Additionally, research suggests COVID-19 may impact serotonin production, so the illness is not only disrupting peoples lives in functional ways, but changing the way their bodies produce hormones and chemicals needed to effectively manage their mood, Perra said.

While theres still a lack of research surrounding Long COVID, Perra said one of the biggest changes that has changed since she began treating the condition in 2021 was the amount of evidence in support of symptoms reported by patients.

A lot of folks were told or given the message that it cant be that bad, or its all in your head or you know, I had COVID, too, and I recovered just fine. So I think theres a lot of folks that were coming to our program feeling like they werent believed, Perra said.

We still lack evidence. We still lack research. Theres more and more coming out. And Im really heartened by that, Perra said. Being able to tell someone, yes, this is why we think this is happening for you and theres research to support that, its really relieving and validating for patients to hear that.

Looking at the Long COVID recovery group, theres a powerful aspect to being around others who may not share the exact same story, but can understand someones frustration in not being able to get up from the couch and load a dishwasher when they were previously able to run a household, Perra said.

While we continue to understand Long COVID better, McCann said there are likely more people realizing they have some form of the illness.

As we start figuring this out, you know, I think the best thing that people can do is just have empathy for those struggling with things, McCann said.

Everybodys going through something, right? If someones just like, You know, Im not feeling like Ive got the energy for it today, they dont need a motivational speech from you. They just need, You know, I get it. No problem, McCann said.

One of the most difficult parts of treating Long COVID is the slow progression and the different impacts the condition has on people, Jabin said.

Perra also noted that the rate of improvement differs between patients because of how their symptom profile may be impacted by other health conditions.

This is what I tell folks at the beginning of our group treatments too: People get better. It takes time. Its up and down. Its different. I mean, this is a major medical event in your life, and we have to treat it as such. So its not that theres no guarantee that we can go back to being the same person that we were before you had COVID, just like theres no guarantee that youre going to get back the same level of functioning that you had before your stroke, but there could be, Perra said.

If there's a way to be any less empathetic than denying the very thing that causes so many people to be suffering right now, I don't know what that is.

In her treatment sessions, Jabin said she works with patients on what they enjoy doing before they began experiencing Long COVID symptoms, using small goals to build toward a larger goal, like walking around their neighborhood, going shopping or seeing a movie.

McCann said he is grateful he has been able to find a middle ground with his body to where he is able to travel and go hiking.

There are days where, yeah, Im not climbing a mountain, but I can at least enjoy the atmosphere of where Im at, wander around the city a little bit or something. And, you know, on a good day, I can do more, McCann said.

Its not 100% of how you used to live your life and the things you used to enjoy, but you get to still do them at a level that still makes you happy, McCann said.

McCann also shared frustration at COVID-19 denial.

If theres a way to be any less empathetic than denying the very thing that causes so many people to be suffering right now, I dont know what that is, he said.

On March 1, the Centers for Disease Control and Prevention (CDC) updated its isolation recommendations for COVID-19 and other respiratory viruses, reducing isolation to 24 hours if symptoms have improved and if a fever is no longer present without the use of fever-reducing medication.

With the decision drawing concern and criticism from medically vulnerable individuals, with Long COVID activists arguing the decision ignoring the risk of post-COVID-19 symptoms and the lack of a clear cure.

While it is a laudable goal to have guidelines that are streamlined across common respiratory viruses that are easier to understand, these new guidelines fail to accurately reflect the reality of some of the key differences between COVID, the flu, and RSV, Maria Town, president and CEO of the American Association of People with Disabilities said in a statement.

Efforts to treat COVID more like the flu fail to recognize that COVID is not the flu, COVID is COVID a virus that, per the CDCs own resources, is more contagious than the flu, can cause more severe illness than the flu, causes more post-viral illness than the flu, and is infectious to others longer than the flu, Town said.

There's days I struggle a little more than others to be sure, but you know, I'm able to function reasonably well, you know, the majority of the time and there's people out there that aren't.

As researchers continue to search for a treatment for Long COVID, McCann said another big question was the long term impact. He also called for a reevaluation of the health care system.

I cant tell you how frustrating its been to have doctors want to do various tests on me and my insurance company say, Well, you can do it, but were not paying for it because you dont have a disease that meets the criteria for that, McCann said

I am fortunate that Im in a position where I can still move forward and pay things out of pocket if I need to, but if I were to total up the bills that I pay in the last three years dealing with this, it would be shocking, McCann said.

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It's been 4 years since COVID hit Michigan. For Long COVID patients, the pandemic isn't over. Michigan Advance - Michigan Advance