{"id":7198,"date":"2025-07-13T17:54:04","date_gmt":"2025-07-13T17:54:04","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/7198\/"},"modified":"2025-07-13T17:54:04","modified_gmt":"2025-07-13T17:54:04","slug":"patients-worry-as-st-louis-long-covid-clinic-set-to-close","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/7198\/","title":{"rendered":"Patients worry as St. Louis\u2019 Long COVID clinic set to close"},"content":{"rendered":"


\n Michele Munz | Post-Dispatch
\n <\/a><\/p>\n

ST. LOUIS \u2014 They face different symptoms of Long COVID, but they all share one common experience \u2014 finding answers at a clinic run by Washington University School of Medicine.<\/p>\n

For three years, Emily, 34, from St. Louis, said she suffered with crushing fatigue, nausea, a racing heart rate and difficulty breathing after getting COVID-19 in August 2020. Her first appointment with a nurse at the Care and Recovery After COVID-19 (CARE) Clinic was life changing.<\/p>\n

\u201cShe said everything I was describing was in line with the experiences of other patients and consistent with what we know about Long COVID,\u201d Emily said. \u201cAfter three years, I could name my condition definitively, and a health care professional wasn\u2019t afraid to take my suffering seriously.\u201d<\/p>\n

The WashU clinic opened in October 2020 \u2014 about seven months into the COVID-19 pandemic \u2014 and hundreds of patients have since come through its doors<\/a>.<\/p>\n

\n People are also reading\u2026\n <\/p>\n

Now those patients are facing confusion and distress after learning that the clinic will be closing at the end of this month.<\/p>\n

Several interviewed by the Post-Dispatch say they\u2019ve been given vague reasons as to why. Their future appointments have been canceled, and they are unsure how their care will be coordinated in the future.<\/p>\n

Many patients only wanted to be identified by their first names because of stigma associated with the disease.<\/p>\n

\u201cI am terrified to lose access to the only doctors who not only believed but understood me,\u201d said Jess, 36, of St. Louis. \u201cI\u2019ve come so far in my progress, and I am scared to lose everything I\u2019ve worked so hard for without the support of Long COVID-competent providers.\u201d<\/p>\n

Dr. Victoria Fraser<\/a>, chair of the university\u2019s Department of Medicine, said the clinic is closing mainly because of the abrupt departure of its leading physician, whose spouse got a job in another state.<\/p>\n

\u201cWe got unfortunately very short notice that she was leaving, so we really didn\u2019t have another physician to take over the practice,\u201d Fraser said.<\/p>\n

The university is working on a \u201ctransition plan,\u201d she said, which may involve replacing the physician and reopening the clinic, or it may not.<\/p>\n

If not, university leaders are making sure that patients \u2014 many of whom have complex conditions \u2014 continue to receive ongoing care from their team of specialists, Fraser said.<\/p>\n

\u201cThat\u2019s why the transition is not super simple at this point,\u201d she said. \u201cWe\u2019re working with a number of different specialists to figure out how we can care for these patients in the best way possible.\u201d<\/p>\n

The clinic\u2019s website<\/a> informs visitors of the closure. \u201cHowever, we are still committed to supporting people with Long COVID,\u201d it states.<\/p>\n

The site provides a phone number and email address of a community health worker who can connect callers to medical specialists and support resources.<\/p>\n

\u201cYour primary care doctors can refer you to the appropriate WashU specialist,\u201d the website states.<\/p>\n

Several patients say, however, that primary care physicians have little experience with or may even be skeptical of the disease.<\/p>\n

Patients say they are fearful that losing the clinic means losing a knowledgeable resource on the latest Long COVID research, referrals to specialists who have developed expertise in treating Long COVID symptoms and access to participating in clinical trials for new treatments.<\/p>\n

They fear they will lose the progress they have made in improving their health.<\/p>\n

Emma, 38, of St. Louis County, was healthy and lifting weights five days a week before she got COVID-19 in May 2022. She found her way to the CARE Clinic after six months of dealing with extreme fatigue, migraines, nausea, allergic reactions and other symptoms. Until then, providers had only responded to her with shoulder shrugs.<\/p>\n

\u201cThrough the therapeutics and the referrals I\u2019ve gotten from the Long COVID clinic, I am just now starting to get something that resemblances a life back,\u201d Emma said. \u201cI can tend my garden. I can play with my nieces. Stairs are still my nemesis, but they don\u2019t knock me down anymore.\u201d<\/p>\n

The patients also worry about those who get sick in the future.<\/p>\n

\u201cLosing the CARE Clinic is a devastating blow. It affects current patients who have spent years struggling with daily tasks and also future patients who will need answers, support and treatment,\u201d said Alex, 36, of Jefferson County. \u201cThe closure of this clinic makes it feel like help is slipping away when we need it most.\u201d<\/p>\n

Long COVID\u2019s broad reach<\/p>\n

Angela, 47, who lives in the Metro East, found herself with debilitating neurological issues, chest pains and gastrointestinal problems after getting COVID in June 2022. A year later, she has lost her 20-year career in the utility industry and become disabled.<\/p>\n

With her husband working, her two sons have become her caregivers, she said. \u201cIt is truly a nightmare.\u201d<\/p>\n

Coming to the clinic, however, gave her hope for a cure.<\/p>\n

Long COVID<\/a> is a chronic condition that includes a wide range of symptoms that occur after a COVID-19 infection and last at least three months. The symptoms can range from mild to severe \u2014 including organ damage and blood clots \u2014 and can even result in a disability.<\/p>\n

Around 23 million Americans had symptoms of Long COVID in 2023, according to the National Institutes of Health<\/a>. The burden is thought to be even higher now \u2014 around 44 million<\/a>. Subsequent COVID infections can also worsen symptoms.<\/p>\n

The latest federal survey in September<\/a> estimates that 18% of adults have had Long COVID. And about a quarter of adults with the disease report significant limitations in performing daily activities.<\/p>\n

Hundreds of Long COVID clinics opened across the country at the start of pandemic, but many are now closed, according to an April article published in The Atlantic<\/a>.<\/p>\n

A reporter called 171 clinics and found 61 had closed, 15 were unreachable and 11 did not have a medical doctor or nurse on staff. Only 79 were accepting new patients. The closest to St. Louis are in Kansas City and Chicago.<\/p>\n

The only clinic in North Carolina \u2014 the University of North Carolina COVID Recovery Clinic \u2014 closed its doors last month. A press release<\/a> blamed \u201cthe loss of multiple funding sources,\u201d with officials offering few details<\/a>.<\/p>\n

The closures come as Long COVID remains poorly understood and managed. No prescriptions, supplements or over-the-counter medications are approved to prevent or treat Long COVID, and more research is needed.<\/p>\n

\u201cWith each clinic that shuts down, our communities lose not just care but also hope for recovery and a better quality of life,\u201d said Laurie Jones, executive director of the worldwide patient advocacy organization #MEAction<\/a>, especially as people continue to get COVID-19. \u201cShutting down these clinics is not only harmful, it\u2019s dangerously short-sighted.\u201d<\/p>\n

While the Biden administration undertook efforts to increase understanding of the disease and improve care<\/a>, the Trump administration\u2019s efforts to cut federal spending and crack down on student protests it deems as antisemitic has caused post-COVID research programs at universities like Columbia University<\/a> to take a hit.<\/p>\n

As part of a \u201creorganization,\u201d the U.S. Department of Health and Human Services in March also shut down<\/a> the Long COVID Advisory Committee and the Office of Long COVID Research and Practice, which helped coordinate Long COVID research across the nation.<\/p>\n

HHS also tried to cancel<\/a> a $1.7 billion federal Long COVID research program \u2014 Researching COVID to Enhance Recovery (RECOVER)<\/a> \u2014 stating it would \u201cno longer waste billions of taxpayer dollars responding to a non-existent pandemic that Americans moved on from years ago.\u201d<\/p>\n

However, the research program was rescued from the chopping block after pushback from patients and researchers.<\/p>\n

The program recently discovered that up to 5.8 million American children have Long COVID<\/a>, suggesting it could now be the most common chronic condition among children.<\/p>\n

Washington University is one of 12 universities participating in the RECOVER research program, which aims to accelerate scientific progress and provide patients with services they need.<\/p>\n

The university was awarded a five-year $4.5 million RECOVER grant in the fall of 2023 to identity patient needs and improve care across Missouri<\/a> through efforts such as working with community clinics and the University of Missouri to increase primary care physicians\u2019 knowledge about the disease, especially in underserved and rural areas.<\/p>\n

The university is also participating in studies<\/a> testing medications to improve symptoms such as fast heart rate, dizziness and fatigue; a rehabilitation program to prevent energy crashes; and a procedure to improve the sense of smell.<\/p>\n

University officials say the research will continue and not be impacted by the clinic\u2019s closure.<\/p>\n

Although the university did not disclose the number of patients the clinic has been treating, Fraser mentioned that the figure \u201chas been declining significantly\u201d over time. These slowing numbers have also been seen nationally, she said, as patients\u2019 symptoms gradually improve.<\/p>\n

\u201cBut there still are a number of patients who are suffering, and we understand that and want to best help them however we can,\u201d she said.<\/p>\n

\u2018Terrified of backsliding\u2019<\/p>\n

Long COVID patients at the CARE clinic say they have been guided through numerous helpful interventions, including simple things such as compression stockings, not eating certain fruits and vegetables, drinking salt water and taking antihistamines.<\/p>\n

They describe receiving physical therapy plans that understand how their energy can be depleted and send them into a worsening cycle \u2014 knowledge that has helped many maintain their careers.<\/p>\n

The clinic also funneled them to specialists in areas such as cardiology, neurology and orthopedics that became experienced in identifying symptoms and treatment strategies tailored to each patient.<\/p>\n

Jess describes having gone from needing a wheelchair to being able to go on a 20-minute walk.<\/p>\n

Emily said after her first appointment, she started speech, occupational and physical therapy with practitioners who had built a body of knowledge to support Long COVID patients. She learned skills to help her memory and attention.<\/p>\n

\u201cThe Long COVID clinic was a door to health care professionals who were actively researching, learning and re-tooling effective approaches,\u201d she said.<\/p>\n

Rusti Levin, 72, of St. Louis, said she caught COVID-19 for the first time in February and went to the clinic in May. During a two-hour appointment, she learned lifestyle interventions and was connected to an array of specialists. Now her follow-up appointment at the clinic in November has been cancelled.<\/p>\n

\u201cI don\u2019t know what to expect,\u201d Levin said. \u201cI will wait to hear from the different departments to see what is happening with the rest of the Long COVID specialists, and if I can continue to see them in spite of the clinic shutting down.\u201d<\/p>\n

The clinic also brought clinical trials to St. Louis, which many patients say they participate in. Now, they fear losing the clinic could also mean losing access to future trials and a local pipeline for innovative treatments.<\/p>\n

\u201cWithout a dedicated Long COVID clinic, what incentive will there be for large research studies like RECOVER to come here?\u201d Emma asked.<\/p>\n

\"WashU<\/p>\n

Heidi Bartels, 47, of St. Louis, lies down in the bedroom of her St. Louis home after trying to do some work on her laptop on Thursday, July 11, 2025. Bartels has Long COVID and deals with sleep problems, extreme fatigue, brain fog, joint and body pain, depression among other symptoms.<\/p>\n

Laurie Skrivan, Post-Dispatch<\/p>\n

Heidi Bartels, 47, of St. Louis, said Long COVID has taken everything she worked so hard for after overcoming a heroin addiction in 2012 \u2014 her career, helping others in recovery and being the kind of mom she wants to be.<\/p>\n

The clinic was not only helping her navigate her physical illnesses but saving her from crushing depression.<\/p>\n

\u201cLosing the Long COVID clinic feels like losing my compass just as I learned to chart a new course,\u201d Bartels said. \u201cI\u2019m terrified of backsliding.\u201d<\/p>\n

Much of the discoveries and research into Long COVID so far has been the result of patient advocacy efforts<\/a>. Area patients say they will continue to work together and have launched a group call Long COVID STL<\/a>. They urge others to contact stllongcovid@gmail.com<\/a> to find support.<\/p>\n

Emily said, \u201cWe continue daily to embody a public health crisis that the world has politicized and largely turned its back on \u2026 Losing the clinic is one more reminder that while the world moves on, we can\u2019t.\u201d<\/p>\n

<\/p>\n


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