Millions of Americans have developed debilitating long-term symptoms from COVID-19.
These individuals, called “long haulers,” have caught much of mainstream medicine off-guard, and already constitute the largest wave of newly disabled people in a generation.
Some top experts fear long haulers could experience a range of post-COVID effects for decades to come. Therefore, educating doctors, nurses, physical therapists, and other health providers on how to treat and manage Long COVID presents one of the most important new challenges in medical education.
As many as one in five people who fall ill with COVID-19 experience symptoms lasting for months, according to recent data from the Centers for Disease Control and Prevention (CDC).
The Biden administration is poised to release its national action plan for Long COVID in early August. This comprehensive set of policies comes a year after President Biden first announced Long COVID protections under the Americans with Disabilities Act in July 2021. The initiative’s new whole-of-government approach includes important substantive provisions to educate medical professionals about Long COVID and related conditions.
Education of medical professionals has the capacity to revolutionize care for long haulers. But the initiative’s likelihood of success will depend on how directly it engages with patients and with the history of post-viral illness.
The initiative’s likelihood of success will depend on how directly it engages with patients and with the history of post-viral illness.
Chronic Illness Patient Groups Predicted Long COVID
Early in the pandemic, two patient experts—Brian Vastag and Beth Mazur—wrote one of the first major essays on Long COVID, predicting that the pandemic could cause millions of Americans to develop post-viral syndromes, potentially leaving a significant percentage of the population with a form of disability.
The pair had a uniquely valuable vantage point. Vastag is a disabled former Washington Post science writer. Mazur—who became disabled following an H1N1 flu infection—is a co-founder of the ME Action Network, an organization that advocates for those living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (Full disclosure: I serve on ME Action’s board.) Both had flourishing careers in science and technology before post-viral conditions presented new challenges to achieving their ambitions.
One of more than thirty-five organizations that have joined together in The Century Foundation’s Disability Economic Justice Collaborative, ME Action educates clinicians on existing research and directs patients on how to get the best care.
In 2020, ME Action launched its “Stop. Rest. Pace” campaign on social media, racing to educate newly sick COVID long haulers about how to manage their condition in spite of a general lack of awareness in the medical community.
The campaign’s slogan was a snappy summation of decades of research. Among the most important bits of advice from expert clinicians and long-time patients is the advice to use “pacing.” By contrast, so-called graded exercise therapy risks harming patients when recommended as a primary treatment intervention.
Patient Experts Have Stepped into the Breach
Long haulers who fell sick quickly coalesced together in groups online, surprised by life-altering health consequences that lasted for weeks, and then months, while struggling to find doctors who understood or even believed in the reality of their conditions. Left by and large without support from the medical establishment, they traded tips and wrote their own guidelines on how to navigate the complexities of disabling chronic illness.
Karyn Bishof, the founder of the Covid-19 Longhauler Advocacy Project, created a comprehensive guide for long haulers and physicians. Bishof was disabled by long-term health consequences brought on by COVID, and was unable to continue working as a firefighter and a paramedic. Insights from the ME/CFS patient community have become a vital lifeline for long haulers struggling to understand what has happened to them and how to manage their new life in the aftermath of COVID.
Left by and large without support from the medical establishment, they traded tips and wrote their own guidelines on how to navigate the complexities of disabling chronic illness.
Recent studies show that 45 percent of long haulers meet the case definition for ME/CFS. That fact alone should lead clinicians to resources for treating these types of chronic, complex patients; perhaps foremost among them is the ME/CFS Clinician Coalition, which offers the deepest knowledge set available, from clinicians who’ve spent their careers treating and researching the disease.
The authors advise that ME/CFS should be considered a differential diagnosis for Long COVID.
While this information is carefully cultivated by a small coterie of clinician experts, it often isn’t well disseminated to the wider medical community. However, it can flourish among pockets of informed patients in peer support groups.
Academic Bodies Have Released Early Treatment Guidelines
Meanwhile, a year into the pandemic, the CDC released interim treatment guidelines for “post-Covid conditions” in the summer of 2021, noting how Long COVID closely resembled previously described post-viral conditions, including ME/CFS, mast cell activation syndrome, and postural orthostatic tachycardia syndrome (POTS).
The American Academy of Physical Medicine and Rehabilitation (AAPM&R) published consensus statements based on meetings with clinicians from dozens of United States Long COVID clinics.
The guidelines from medical providers and patient groups highlight various best practices, including the following:
- A positive COVID test should not be required to enter a Long COVID clinic. Due to testing shortages in many areas at different stages of the pandemic, or to poor quality tests, many patients with Long COVID were not able to register a positive PCR test. This inability to provide test results often presents challenges in accessing post-COVID care. Patient advocacy groups have campaigned vociferously that a positive PCR test should not be seen as a prerequisite for receiving care.
- It is critical that providers validate symptoms and listen to patients. Many patients report feeling dismissed by doctors, given that their symptoms and illness might not show up as an objective abnormality on a lab diagnostic. There is no widely recognized biomarker yet, due in part to the complexity of the illness, as well as a paucity of research to date into post-viral conditions.
- At its best, care should be multidisciplinary and coordinated. Long haulers frequently need care from a variety of medical specialists, including but not limited to pulmonologists, cardiologists, rheumatologists, neurologists, and physical therapists. The care from the various specialists can be coordinated by a primary care provider. And while there isn’t yet any single “silver bullet” drug, the CDC and AAPM&R recommend using approved medications to treat patients’ complaints, including for pain and sleep.
- Pacing, planning, prioritization, and positioning are crucial for successful treatment. In managing symptoms day-to-day, the AAPM&R’s consensus statements from its Long COVID clinics emphasize that clinicians should work with patients to develop strategies to plan and prioritize the daily activities that are most essential.
It is also important to teach clinicians proper administrative coding for the new condition. The CDC’s National Center for Health Statistics approved a billing code formalizing the condition as part of the World Health Organization’s International Classification of Diseases. The designated ICD-10 code, U09.9 for “post COVID-19 condition,” rolled out in October 2021, enabling providers to diagnose, track, and bill for Long COVID. Further efforts to educate clinicians about the code are a vital part of enabling patients to access the care they need.
Government Can Lead a National Education Effort
To best meet the need to educate providers, experts in post-viral illness emphasize building directly from the high-quality research commissioned by the federal government so far, which have called for correcting educational disparities in the conditions most commonly associated with Long COVID.
In 2015, the Institute of Medicine (IOM; now called the National Academy of Medicine), cited data showing that “fewer than one-third of medical school curricula and less than half of medical textbooks” included information about ME/CFS. Correcting that gap now should be seen as an integral part of resilience to COVID and future viruses.
To best meet the need to educate providers, experts in post-viral illness emphasize building directly from the high-quality research commissioned by the federal government so far, which have called for correcting educational disparities in the conditions most commonly associated with Long COVID.
That IOM panel recommended new diagnostic criteria for ME/CFS and called for wide dissemination of the material. They emphasized that it is historically under-researched and advocated for more education.
One piece of legislation, the bipartisan Long Haulers Act, co-sponsored by Representatives. Don Beyer (D-VA) and Jack Bergman (R-MI), would authorize $30 million for the CDC to educate providers and the general public about post-viral illnesses related to PASC.
Senator Tim Kaine (D-VA)’s TREAT Long COVID Act, proposed in April 2022, proposes funding education of clinicians about PASC and related post-viral conditions, including ME/CFS, POTS, and mast cell activation syndrome.
Also in April, President Biden signed a presidential memorandum giving agencies 120 days to submit a national action plan in order to initiate a whole-of-government effort, empowering agencies to marshal resources toward preventing, detecting, and treating Long COVID.
The administration expects to provide educational and clinical support through platforms such as the Centers for Medicare and Medicaid Services (CMS) Learning Network, and to convene experts from across the country to provide recommendations to the nation’s providers. At each step of the way, these efforts should ensure that patient voices are well represented and that established post-viral clinical experts are included.
Keeping Patients at the Center
Last month, ME Action submitted its recommendations to HHS for the Long COVID National Research Action Plan, which include incorporating an understanding ME/CFS throughout the federal government’s approach.
“We know about the history of the disease,” said Jaime Seltzer, the director of science and medical outreach for ME Action. “There are symptoms and concepts that we know more about because we’ve pioneered them or we’ve looked into them. I have often said when it comes to research, there’s no motivation like suffering. No matter how intellectually curious you are. That intellectual curiosity is not going to beat suffering as a motive to know more.”
She emphasizes that patients are often the experts when it comes to their own health, especially when their disease hasn’t been widely researched and treatment options are hard to find. Many patients are themselves scientists or health care providers, with professional training that bolsters their own lived experience. And the urgent desire to get better often drives patients to engage more with the medical literature than many clinicians.
“One of our major obstacles in medical education is disbelief in chronicity,” Seltzer explained. “Doctors will say, ‘Yeah, [post-viral illness] can all be cured. And it will.’ That is charmingly naïve.”
Many patients are themselves scientists or health care providers, with professional training that bolsters their own lived experience. And the urgent desire to get better often drives patients to engage more with the medical literature than many clinicians.
That’s not to say that many with Long Covid won’t recover from their post-viral illness. However, given past experience, ME Action is preparing for a large new cohort of long haulers to enter into the ME/CFS and disability community. Many will benefit from seeing Long Covid through a disability lens. That means integrating patients directly into the process of educating clinicians.
“The primary thing that I would emphasize is that patients need to be part of the team from the beginning, from the conceptualization to the end,” Seltzer said. “And those patients need to have some background in science or medicine. There’s also a concept in disability justice where they can’t be the only person in the room who has that perspective. So let’s say a minimum of two people on the team who have the disease, or similar complex, chronic disease.”
She lamented that some early Long COVID research has risked reinventing the wheel. Some clinicians, who were not taught about post-infectious illnesses in medical school, hadn’t been exposed to the already rich literature on post-viral illnesses compiled over the last several decades as part of their mainstream medical education.
Many long haulers, now marking more than two years since first falling ill, have come to understand they must see their lives through a disability frame. In recent decades, disability justice principles have centered around the democratic concept of “nothing about us without us”—the notion that any societal decision about disability must give disabled people direct involvement in the process.
“My experience has led me to say that treating these diseases is incredibly complex,” Seltzer said. “You really do need to know about co-morbidities and how to treat them. You need to know about symptomatic treatment. You need to understand that these patients are often highly sensitive and so your medications need to start much lower. There are all kinds of things that are true about treating these patients that are different than treating somebody with heart disease, where you have a very established set of different meds to try.”
The key to reducing the risk for such mistreatment is to give patients the reins in the effort to educate the medical providers who serve them.
Tags: covid-19, long covid, patient experience
Centering Patients’ Experiences When Teaching Health Providers About Long Covid
Millions of Americans have developed debilitating long-term symptoms from COVID-19.
These individuals, called “long haulers,” have caught much of mainstream medicine off-guard, and already constitute the largest wave of newly disabled people in a generation.
Some top experts fear long haulers could experience a range of post-COVID effects for decades to come. Therefore, educating doctors, nurses, physical therapists, and other health providers on how to treat and manage Long COVID presents one of the most important new challenges in medical education.
As many as one in five people who fall ill with COVID-19 experience symptoms lasting for months, according to recent data from the Centers for Disease Control and Prevention (CDC).
The Biden administration is poised to release its national action plan for Long COVID in early August. This comprehensive set of policies comes a year after President Biden first announced Long COVID protections under the Americans with Disabilities Act in July 2021. The initiative’s new whole-of-government approach includes important substantive provisions to educate medical professionals about Long COVID and related conditions.
Education of medical professionals has the capacity to revolutionize care for long haulers. But the initiative’s likelihood of success will depend on how directly it engages with patients and with the history of post-viral illness.
Chronic Illness Patient Groups Predicted Long COVID
Early in the pandemic, two patient experts—Brian Vastag and Beth Mazur—wrote one of the first major essays on Long COVID, predicting that the pandemic could cause millions of Americans to develop post-viral syndromes, potentially leaving a significant percentage of the population with a form of disability.
The pair had a uniquely valuable vantage point. Vastag is a disabled former Washington Post science writer. Mazur—who became disabled following an H1N1 flu infection—is a co-founder of the ME Action Network, an organization that advocates for those living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). (Full disclosure: I serve on ME Action’s board.) Both had flourishing careers in science and technology before post-viral conditions presented new challenges to achieving their ambitions.
One of more than thirty-five organizations that have joined together in The Century Foundation’s Disability Economic Justice Collaborative, ME Action educates clinicians on existing research and directs patients on how to get the best care.
In 2020, ME Action launched its “Stop. Rest. Pace” campaign on social media, racing to educate newly sick COVID long haulers about how to manage their condition in spite of a general lack of awareness in the medical community.
The campaign’s slogan was a snappy summation of decades of research. Among the most important bits of advice from expert clinicians and long-time patients is the advice to use “pacing.” By contrast, so-called graded exercise therapy risks harming patients when recommended as a primary treatment intervention.
Patient Experts Have Stepped into the Breach
Long haulers who fell sick quickly coalesced together in groups online, surprised by life-altering health consequences that lasted for weeks, and then months, while struggling to find doctors who understood or even believed in the reality of their conditions. Left by and large without support from the medical establishment, they traded tips and wrote their own guidelines on how to navigate the complexities of disabling chronic illness.
Karyn Bishof, the founder of the Covid-19 Longhauler Advocacy Project, created a comprehensive guide for long haulers and physicians. Bishof was disabled by long-term health consequences brought on by COVID, and was unable to continue working as a firefighter and a paramedic. Insights from the ME/CFS patient community have become a vital lifeline for long haulers struggling to understand what has happened to them and how to manage their new life in the aftermath of COVID.
Recent studies show that 45 percent of long haulers meet the case definition for ME/CFS. That fact alone should lead clinicians to resources for treating these types of chronic, complex patients; perhaps foremost among them is the ME/CFS Clinician Coalition, which offers the deepest knowledge set available, from clinicians who’ve spent their careers treating and researching the disease.
The authors advise that ME/CFS should be considered a differential diagnosis for Long COVID.
While this information is carefully cultivated by a small coterie of clinician experts, it often isn’t well disseminated to the wider medical community. However, it can flourish among pockets of informed patients in peer support groups.
Academic Bodies Have Released Early Treatment Guidelines
Meanwhile, a year into the pandemic, the CDC released interim treatment guidelines for “post-Covid conditions” in the summer of 2021, noting how Long COVID closely resembled previously described post-viral conditions, including ME/CFS, mast cell activation syndrome, and postural orthostatic tachycardia syndrome (POTS).
The American Academy of Physical Medicine and Rehabilitation (AAPM&R) published consensus statements based on meetings with clinicians from dozens of United States Long COVID clinics.
The guidelines from medical providers and patient groups highlight various best practices, including the following:
It is also important to teach clinicians proper administrative coding for the new condition. The CDC’s National Center for Health Statistics approved a billing code formalizing the condition as part of the World Health Organization’s International Classification of Diseases. The designated ICD-10 code, U09.9 for “post COVID-19 condition,” rolled out in October 2021, enabling providers to diagnose, track, and bill for Long COVID. Further efforts to educate clinicians about the code are a vital part of enabling patients to access the care they need.
Government Can Lead a National Education Effort
To best meet the need to educate providers, experts in post-viral illness emphasize building directly from the high-quality research commissioned by the federal government so far, which have called for correcting educational disparities in the conditions most commonly associated with Long COVID.
In 2015, the Institute of Medicine (IOM; now called the National Academy of Medicine), cited data showing that “fewer than one-third of medical school curricula and less than half of medical textbooks” included information about ME/CFS. Correcting that gap now should be seen as an integral part of resilience to COVID and future viruses.
That IOM panel recommended new diagnostic criteria for ME/CFS and called for wide dissemination of the material. They emphasized that it is historically under-researched and advocated for more education.
One piece of legislation, the bipartisan Long Haulers Act, co-sponsored by Representatives. Don Beyer (D-VA) and Jack Bergman (R-MI), would authorize $30 million for the CDC to educate providers and the general public about post-viral illnesses related to PASC.
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Senator Tim Kaine (D-VA)’s TREAT Long COVID Act, proposed in April 2022, proposes funding education of clinicians about PASC and related post-viral conditions, including ME/CFS, POTS, and mast cell activation syndrome.
Also in April, President Biden signed a presidential memorandum giving agencies 120 days to submit a national action plan in order to initiate a whole-of-government effort, empowering agencies to marshal resources toward preventing, detecting, and treating Long COVID.
The administration expects to provide educational and clinical support through platforms such as the Centers for Medicare and Medicaid Services (CMS) Learning Network, and to convene experts from across the country to provide recommendations to the nation’s providers. At each step of the way, these efforts should ensure that patient voices are well represented and that established post-viral clinical experts are included.
Keeping Patients at the Center
Last month, ME Action submitted its recommendations to HHS for the Long COVID National Research Action Plan, which include incorporating an understanding ME/CFS throughout the federal government’s approach.
“We know about the history of the disease,” said Jaime Seltzer, the director of science and medical outreach for ME Action. “There are symptoms and concepts that we know more about because we’ve pioneered them or we’ve looked into them. I have often said when it comes to research, there’s no motivation like suffering. No matter how intellectually curious you are. That intellectual curiosity is not going to beat suffering as a motive to know more.”
She emphasizes that patients are often the experts when it comes to their own health, especially when their disease hasn’t been widely researched and treatment options are hard to find. Many patients are themselves scientists or health care providers, with professional training that bolsters their own lived experience. And the urgent desire to get better often drives patients to engage more with the medical literature than many clinicians.
“One of our major obstacles in medical education is disbelief in chronicity,” Seltzer explained. “Doctors will say, ‘Yeah, [post-viral illness] can all be cured. And it will.’ That is charmingly naïve.”
That’s not to say that many with Long Covid won’t recover from their post-viral illness. However, given past experience, ME Action is preparing for a large new cohort of long haulers to enter into the ME/CFS and disability community. Many will benefit from seeing Long Covid through a disability lens. That means integrating patients directly into the process of educating clinicians.
“The primary thing that I would emphasize is that patients need to be part of the team from the beginning, from the conceptualization to the end,” Seltzer said. “And those patients need to have some background in science or medicine. There’s also a concept in disability justice where they can’t be the only person in the room who has that perspective. So let’s say a minimum of two people on the team who have the disease, or similar complex, chronic disease.”
She lamented that some early Long COVID research has risked reinventing the wheel. Some clinicians, who were not taught about post-infectious illnesses in medical school, hadn’t been exposed to the already rich literature on post-viral illnesses compiled over the last several decades as part of their mainstream medical education.
Many long haulers, now marking more than two years since first falling ill, have come to understand they must see their lives through a disability frame. In recent decades, disability justice principles have centered around the democratic concept of “nothing about us without us”—the notion that any societal decision about disability must give disabled people direct involvement in the process.
“My experience has led me to say that treating these diseases is incredibly complex,” Seltzer said. “You really do need to know about co-morbidities and how to treat them. You need to know about symptomatic treatment. You need to understand that these patients are often highly sensitive and so your medications need to start much lower. There are all kinds of things that are true about treating these patients that are different than treating somebody with heart disease, where you have a very established set of different meds to try.”
The key to reducing the risk for such mistreatment is to give patients the reins in the effort to educate the medical providers who serve them.
Tags: covid-19, long covid, patient experience