{"id":484051,"date":"2026-02-22T15:47:10","date_gmt":"2026-02-22T15:47:10","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/484051\/"},"modified":"2026-02-22T15:47:10","modified_gmt":"2026-02-22T15:47:10","slug":"six-years-in-long-covid-is-still-with-many-vermonters-and-they-say-the-system-is-failing-them","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/484051\/","title":{"rendered":"Six years in, long Covid is still with many Vermonters \u2014 and they say the system is failing them\u00a0"},"content":{"rendered":"

\"AMary Kate Shanahan has long covid. Seen in South Burlington on Friday, February 13, 2026. Photo by Glenn Russell\/VTDigger<\/p>\n

Ali knew something was wrong with her body.\u00a0<\/p>\n

She\u2019d always been an active Vermonter and a full-time nurse. But in 2024, she began experiencing shortness of breath, chest pain or sheer exhaustion after the slightest exertion.\u00a0<\/p>\n

So she went to the emergency room \u2014 twice. Both times, the doctors performed a battery of tests: a chest CT scan, an echocardiogram, blood work. Nothing appeared.\u00a0<\/p>\n

\u201cWhy do I feel this horrible all the time?\u201d she said she asked herself. \u201cAnd like, why isn\u2019t anything being picked up if I feel like this horrendous?\u201d<\/p>\n

It took months for her to make the connection between these life-altering symptoms and the relatively mild case of Covid she\u2019d contracted before they began. A neurologist made the final diagnosis: long Covid.\u00a0<\/p>\n

Nearly six years since Covid-19 first came to Vermont, there is still very little known about long Covid, an illness that can cause debilitating chronic fatigue, respiratory issues, brain fog and a host of other symptoms. Despite the fact that millions of Americans have reported living with the disease, there are no clear-cut diagnostic tests. Nor are there treatments with a clear-cut record of success.\u00a0<\/p>\n

Cut off from established pathways for managing a chronic illness, many Vermonters with long Covid have reported living in a sort of permanent limbo. They have faced stigma and disbelief from loved ones, colleagues and people in their community. They have struggled to access workplace accommodations and social services for people with disabilities.<\/p>\n

Long Covid patients are uniquely vulnerable to the recently rising costs and reduced benefits of the health care system under the Trump administration. The status of health insurance subsidies for low-income Americans is still up in the air<\/a> and annual premiums on the marketplace have more than doubled<\/a>.\u00a0<\/p>\n

That\u2019s particularly tough for people who heavily rely on the health care system. In an email, Ali said that she\u2019d recently learned that her insurer might no longer cover a medication she\u2019d been taking for years. It would cost her $80,000 annually out of pocket, she said.<\/p>\n

\u201cI was a lot more functional on the medication, I was considering working more hours while still on the med (in the study),\u201d wrote Ali, who requested VTDigger use only her first name, citing ongoing disputes with her employer. \u201cI can\u2019t work full time because I can\u2019t get this med,\u201d but \u201cbecause I can\u2019t work full time it makes my insurance cost even more.\u201d<\/p>\n

But interviews with disability rights advocates, clinicians and more than a dozen long Covid patients demonstrated that the systemic barriers for Vermonters with long Covid extend well beyond the Trump administration. They reach into deep-seated divides in health care, ableism and shame over chronic illness in Vermont.\u00a0<\/p>\n

Chawna Cota, a member of the Vermont Democratic Disability Caucus who has long Covid, said via email that long Covid sufferers need research, resources and therapies from informed providers.\u00a0<\/p>\n

\u201cWe are still not there yet,\u201d she wrote.<\/p>\n

\u201cThe most positive takeaway I have had from all of this is reinforcement of my knowledge that I have the capability to self-educate and self-advocate within a system that seems to be working against providing care,\u201d Cota added. \u201cWill that change in the future? I really don\u2019t know, and with the current administration\u2019s hostility toward medical research and our medical system in general, I don\u2019t think that will be improving any time soon.\u201d<\/p>\n

There are many adjustments, both large and small, that Krista Coombs has made to keep working.\u00a0<\/p>\n

She often works out of her bed because even sitting up can trigger fatigue for long Covid patients. She wears headphones because of what she calls her \u201cdementia-type\u201d brain fog that can make it easy to get distracted.\u00a0<\/p>\n

\"\"Krista Coombs seen at home in Bennington on Thursday, Feb. 17, 2022. She has suffered from Long Covid after initially recovering from an infection in March of 2020. Photo by Glenn Russell\/VTDigger<\/p>\n

But she feels her work is too critical to step back from. She leads a support group for Vermonters with long Covid through the Vermont Center for Independent Living, where people living with the disease can vent, share tips on treatments and find ways of coping.\u00a0<\/p>\n

\u201cI\u2019ve been listening to what people need,\u201d Coombs said. \u201cThey\u2019re very clear, and giving people a space to actually identify their needs is really powerful.\u201d<\/p>\n

The experience of long Covid varies widely. A 2025 patient survey<\/a> found more than 40 different symptoms can be linked to the disease. Another recent study<\/a> classified long Covid into eight different trajectories of illness, from short-term to long-term, severe to mild, improving to worsening, persistent to intermittent. Even the mechanism by which Covid causes long Covid is unclear \u2014 a growing body of research<\/a> suggests it may be an autoimmune condition, but some researchers believe it could be the result of organ damage caused by Covid.\u00a0<\/p>\n

That variety makes it additionally difficult to analyze the prevalence of long Covid in Vermont. Most surveys simply ask respondents if they experienced lingering symptoms after a bout of Covid. For example, a 2023 Vermont Department of Health report<\/a> found 11% of adult Vermonters who had tested positive for Covid at any point experienced symptoms lasting three months or longer.<\/p>\n

Despite those many different experiences of long Covid, Coombs noted one experience that seemed very common: a widespread lack of understanding of \u201cwhat this actually is and what people are facing,\u201d she said.\u00a0<\/p>\n

\u201cWe\u2019re constantly torn down for just being sick, and continue to be sick from something no one wants to admit is a problem,\u201d she said.\u00a0<\/p>\n

Looking for relief<\/p>\n

Long Covid is recognized as an illness by official bodies such as the U.S. Centers for Disease Control and Prevention<\/a> and the World Health Organization<\/a>. Yet Coombs has encountered misinformation that the disease is actually caused by the Covid vaccine \u2013 or it simply does not exist at all.\u00a0<\/p>\n

The lack of recognition can even seep into personal relationships. Ali said that it took some time for the people in her life to understand just how debilitating chronic fatigue can be.\u00a0<\/p>\n

\u201cMy parents didn\u2019t totally believe me about how sick I was,\u201d she said. \u201cI\u2019m like, \u2018No, I actually can\u2019t go grocery shopping with you or help you with your stuff, because I feel so horrendous.\u2019\u201d\u00a0<\/p>\n

The negative messages can lead some long Covid patients to doubt their own experiences. Mary Kate Shanahan, a birth doula based in Winooski, said she felt embarrassed and worried about others\u2019 judgment the first time she asked to use a wheelchair at the airport.\u00a0<\/p>\n

\u201cNormal people don\u2019t fall asleep driving, and that was something that I was experiencing, so I had to not drive for a long time,\u201d she said. \u201cLike it is a different level of what the typical person experiences, I would say. And that\u2019s a hard thing to really describe to anyone.\u201d<\/p>\n

Coombs has worked for years to bring the voice of long Covid patients to people in power: the Vermont Department of Health, Gov. Phil Scott and Vermont\u2019s Congressional delegation. There was a moment of hope in 2024, when U.S. Sen. Bernie Sanders, I-Vt. proposed a long Covid moonshot bill<\/a> that would provide $1 billion in funding to the National Institutes of Health to study treatment and care options.\u00a0<\/p>\n

That bill has languished in Congress ever since.\u00a0<\/p>\n

\u201cAll this just feels so like a joke now, but it was so much effort and so much work,\u201d Coombs said.\u00a0<\/p>\n

She said she was also frustrated that Long Covid Awareness Day<\/a>, which takes place on March 15 each year, passed by in 2025 without acknowledgement from Vermont\u2019s public officials.\u00a0<\/p>\n

Many long Covid advocates have also said they feel betrayed<\/a> by Robert F. Kennedy, Jr., the Secretary of Health and Human Services under the Trump administration. Kennedy promised <\/a>to fund long Covid research during his Senate confirmation in 2025, but shortly after he assumed his role, his department instead abolished the Office of Long Covid Research and Practice<\/a> and terminated an advisory committee on long Covid<\/a>.\u00a0\u00a0<\/p>\n

Despite these setbacks, hundreds of clinical studies<\/a> of long Covid have been performed around the world. Vermonters with long Covid have described experimenting with an array of medications, diets, exercises and therapies to try to find something that works.\u00a0<\/p>\n

Gretchen Kitsos, a social worker who leads another long Covid support group, said that one of the biggest hurdles to treatment she hears is the disconnected and siloed nature of medical specialties. Each provider has an incentive to view long Covid through the lens of their own expertise rather than as a multi-system whole.\u00a0<\/p>\n

\"AGretchen Kitsos, LICSW, counsels people dealing with the effects of long covid. Seen in Westford on Monday, February 16, 2026. Photo by Glenn Russell\/VTDigger<\/p>\n

The University of Vermont\u2019s COVID Recovery Program<\/a> is one attempt to address that gap. The program\u2019s leads, David Kaminsky and Katherine Menson, are pulmonary physicians \u2014 but after interviews with long Covid patients, they realized what was needed most was a pathway that could connect patients with multiple specialists.\u00a0<\/p>\n

Kaminsky emphasized the importance of continuing to research long Covid.\u00a0<\/p>\n

\u201cIf we lose research, then we lose the opportunity to learn about new things and what works, and what doesn\u2019t,\u201d he said.<\/p>\n

Kitsos said the momentum for helping people with long Covid seems to have ebbed since the pandemic has largely receded from many people\u2019s minds.<\/p>\n

She said people seem to think, \u201c\u2018We survived that. Okay. Now let\u2019s move on, and let\u2019s not look in the rear view mirror and understand that that sucker is still with us.\u2019\u201d<\/p>\n

Life with long Covid<\/p>\n

After contracting Covid three times, Zoe Newmarco began experiencing crushing fatigue and suffered from migraines four to six times per week.\u00a0<\/p>\n

\u201cIt\u2019s been an adventure,\u201d they said jokingly. \u201cI feel like I\u2019ve learned all sorts of new things that my body can do.\u201d<\/p>\n

Newmarco said they called the long Covid clinic at Dartmouth-Hitchcock multiple times, but never heard back. They struggled to even find a primary care provider.\u00a0<\/p>\n

\u201cI was on every waiting list in the state, just called everywhere, and they were like, \u2018Yeah, we\u2019ll get back to you in six months,\u2019\u201d they said.\u00a0<\/p>\n

So they decided to jump ship and move from Royalton, Vermont, to Ithaca, New York, roughly six hours away.\u00a0<\/p>\n

\u201cFor the first time I have access to health care, which has been a huge change,\u201d they said.\u00a0<\/p>\n

Staffing shortages and rising health care costs have affected almost every corner of Vermont. But for Vermonters with chronic illnesses, including long Covid, those issues can be particularly pressing.\u00a0<\/p>\n

Coombs said for the past two months, she\u2019s been dealing with her insurance refusing to reauthorize an infusion she\u2019d been taking every week because her insurance company is based outside of Vermont. She said she has also been waiting to get access to an experimental treatment that has shown recent promise.\u00a0<\/p>\n

\u201cIt was only kind of on the West Coast, and it\u2019s now moving to the East coast, so I\u2019ve been literally watching it across the map,\u201d she said. \u201cI\u2019ll be the first person within my doctor\u2019s office who\u2019s able to figure out how to get it.\u201d\u00a0<\/p>\n

Her support group spent a great deal of time in 2025 trying to navigate news around benefit changes, health insurance subsidies and policies being discussed at the federal level, Coombs said.\u00a0<\/p>\n

\u201cYou look around Vermont, just so many struggles,\u201d she said. \u201cAnd then we know with long Covid, it can be really hard to work. So that makes things harder. I\u2019m just trying to help people stay grounded in, what are the things we know now? What can we work on now?\u201d<\/p>\n

Kitsos pointed out that stress from economic struggles can potentially worsen autoimmune conditions like long Covid.\u00a0<\/p>\n

Yet at the same time, long Covid patients are forced to seek help while navigating symptoms like brain fog that can make it actively harder to think, Coombs said.\u00a0<\/p>\n

\u201cPeople are trying to figure out how you do this with a lot of cognitive difficulties,\u201d she said.\u00a0<\/p>\n

Ali, the nurse with long Covid, said that she had to submit and resubmit paperwork multiple times to receive her benefits under the Family and Medical Leave Act. Meanwhile, she ran out of medical leave to use, even though she was still in the midst of her worst symptoms.<\/p>\n

\u201cI was just kind of calling out of work sometimes and hoping that I wouldn\u2019t get in trouble for that,\u2019\u201d she said. \u201cAnd I\u2019m like, \u2018Please don\u2019t fire me, because I need my benefits to pay for all of this, like, crazy amounts of testing and all the medications and everything.\u201d\u00a0<\/p>\n

Still, despite the difficulties of the condition, there are moments of joy and hope. Coombs said that her progress with recovery was unsteady and slow.<\/p>\n

But it was happening.\u00a0<\/p>\n

\u201c(With) carrying in wood \u2014 the first year, I couldn\u2019t even lift a log, and I couldn\u2019t believe that,\u201d she said. This year, she\u2019s able to carry in wood and keep track of the fire without thinking about it.<\/p>\n

For some patients, the most effective strategy for living with long Covid is not a specific treatment, but rethinking how they choose to expend energy to prevent later crashes, often called pacing. Shanahan said she began documenting all the ways she expended energy, both mentally and physically, to see how working too hard on Tuesday could cause fatigue on Thursday or Friday. Now, she\u2019s learned how better to slow down and prevent overdoing it.\u00a0<\/p>\n

Ali said her experience had given her added insight as a nurse because she could better understand her patients who were living with a disability or chronic illness.\u00a0<\/p>\n

\u201cYou don\u2019t really understand how difficult it is to live with a disability until you\u2019ve experienced it yourself,\u201d she said.\u00a0<\/p>\n

Newmarco said they have learned new tools for self-advocacy and communication about their needs. They\u2019ve also formed a small community of friends who are supportive of them \u2014 including their partner, who they met in a Covid-cautious online forum.\u00a0<\/p>\n

\u201cIt feels so complex,\u201d they said. \u201cOf course I miss my body before long Covid. I miss being able to go for walks. I miss that, and also, it has totally changed my world. And I really love my life right now.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"Mary Kate Shanahan has long covid. Seen in South Burlington on Friday, February 13, 2026. Photo by Glenn…\n","protected":false},"author":2,"featured_media":484052,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[59],"tags":[20734,97,252,253,7541],"class_list":{"0":"post-484051","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health-care","8":"tag-covid","9":"tag-health","10":"tag-health-care","11":"tag-healthcare","12":"tag-long-covid"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/484051","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=484051"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/484051\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/484052"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=484051"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=484051"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=484051"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}