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chuka_lisAddressing the Long-term Effects of COVID-19
The US Now Has a Research Plan for Long COVID—Is It Enough?
Тhe COVID-19 pandemic is the most significant medical and public health challenge the US has encountered in the last 100 years. As of July 26, 2022, an estimated 90 million cases of COVID-19 have been reported in the US, with an estimated 1 million COVID-19–related deaths. The current number of SARS-CoV-2 infections is difficult to estimate accurately, considering that many individuals with positive self-test results do not seek care or report their infection. At the same time, new coronavirus variants continue to emerge, with Omicron subvariants such as BA.5 and BA.4 now identified as the dominant circulating strains.
From the start of the pandemic, infected individuals exhibited different patterns of recovery. Some patients partnered with other groups of patients with similar or overlapping sets of symptoms and voiced their concerns to health care professionals, allowing recognition of what has been referred to as “Long COVID.”
The first group includes individuals with Long COVID and associated conditions. Long COVID already has affected a substantial number of people, and this number may continue to increase as new COVID-19 cases occur. Recent studies demonstrate the potential enormity of the problem for the US health care and public health systems. Long COVID can affect nearly every organ system and can manifest as new-onset chronic disease such as heart disease, diabetes, kidney disease, hematologic disorders, neurologic conditions, and mental health disorders.2
A 2022 study by the CDC that analyzed electronic health records and included 63.4 million individuals estimated that 1 in 5 adult COVID-19 survivors aged 18 to 64 years and 1 in 4 survivors aged 65 years and older have a health condition related to their previous COVID-19 illness.5 A parallel modeling study estimated that 4.3 million to 9.7 million US adults have new long-term symptoms that limit their daily activities after SARS-CoV-2 infection and that women may be disproportionally affected.6 Furthermore, based on self-reported data from 62 000 adults who participated in the Census Bureau’s online Household Pulse Survey in June 2022, 35.1% of those who reported having had COVID-19 (n = 25 049) reported experiencing Long COVID symptoms at some point and 18.9% reported having Long COVID symptoms currently.7 While estimates of incidence and prevalence of Long COVID vary across studies and settings, the breadth of symptoms and conditions that are manifestations of Long COVID and the potential cumulative health effects are consistent throughout the scientific literature.
Long COVID and associated conditions as well as the longer-term sequelae of the pandemic will continue to affect patients and families. The medical and public health community have made dedicated efforts during the last 2½ years to stopping the spread of this deadly coronavirus and have implemented prevention methods, developed treatments, and released vaccines that have been central to reducing initial COVID-19 infections and preventing Long COVID. It is important to focus a new lens on the pandemic and direct much-needed attention to Long COVID. Taking care of affected patients presents challenges given the incompleteness of research, the lack of sufficient diagnostics support, and pervasive problems with access to services.
The new plan acknowledges that research is urgently needed to unravel the biological mechanisms that underpin the more than 200 symptoms and signs and 50 conditions attributed to Long COVID and to develop evidence-based treatments for them. But some say the plan—although a step in the right direction—touts already existing federal initiatives that are insufficient and slow-moving.
The plan defines Long COVID as “a multifaceted disease that can affect nearly every organ system” and can manifest as new or worsening chronic health problems, including but not limited to heart disease, diabetes, kidney disease, hematologic issues, and mental and neurologic conditions. The signs, symptoms, and conditions continue or arise anew 4 weeks or more after the initial symptomatic or asymptomatic infection and may be relapsing and remitting.
the pace and scope of the US government’s research response to Long COVID has been inadequate. “The slowness with which the NIH and the CDC are addressing this problem…is unjustifiable given the urgency of the problem,” he said. “This is equivalent to needing a vaccine, frankly. You’ve got millions, maybe more than 10 million people, afflicted with [Long COVID
Tulane School of Medicine clinical neurologist Michele Longo, MD, MPH, and a colleague opened a post-COVID care clinic in the fall of 2020, one of many such centers launched during the pandemic. The New Orleans–based clinic and more than 40 others are part of the PASC Collaborative, an initiative organized by the American Academy of Physical Medicine and Rehabilitation (AAPM&R). Longo said the collaborative’s members are excited and encouraged by the new research agenda. “The plan definitely addresses the requests that we’ve had for a whole-government response to Long COVID,” she said in an interview
She also highlighted the plan’s emphasis on equitable access to care. In her view, making sure care is available to all individuals with Long COVID should be the top priority. “We don’t want to see the same health disparities in care that we saw with acute management and treatment of COVID carry into the next public health crisis, which is going to be the care of people with Long COVID,” she said.
Some symptoms patients with Long COVID struggle with like fatigue and shortness of breath can be managed with energy conservation techniques and by taking frequent breaks from prolonged physical or cognitive activity. Physical therapists, occupational therapists, speech therapists, and behavioral health specialists all may have a role in symptom management. But patients first need to get in the door. Her clinic currently has a 4- to 6-month waiting list and elsewhere the delays can be even longer, despite many centers offering both in-person and telemedicine appointments. If access is to be improved, Longo said, Long COVID treatment must be integrated into primary care.
She and Meriquez Vázquez said that’s not currently the case. Meriquez Vázquez said: “The experience of many patients is still going into a doctor’s office, getting a ‘normal’ assessment, getting ‘normal’ lab work, and then being sent on their way.”
“Everybody who’s suffering from Long COVID has a right to be frustrated,” Krumholz said. Although some physicians still may not believe that Long COVID exists—the new research plan explicitly states that it does—others may be flummoxed by the array of nebulous symptoms patients describe, many of which have no biomarker-based tests.
The most frequent symptom is fatigue, according to Longo, and patients also commonly struggle with “brain fog”—problems with focus, memory, and word recollection—sleep disturbances, mood changes, headaches, loss of taste and smell, heart palpitations, dizziness, shortness of breath, cough, chest pain, diarrhea, stomach pain, joint or muscle pain, rashes, and pins-and-needles feelings.
The PASC collaborative and other groups are developing guidance to assist clinicians in treating these symptoms and improve patient care. So far, the PASC collaborative has released consensus guidance statements for fatigue, cognitive symptoms, breathing discomfort, and cardiovascular complications.
Meriquez Vázquez said that many primary care physicians, particularly those who serve the Medicaid population, aren’t aware that Long COVID can manifest as diagnosable conditions such as postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
“There’s definitely growing frustration that the information that does exist on these conditions is not being readily disseminated by public health out to clinicians, especially primary care,” she said. She noted that scientific efforts are also lagging: “For the most part big investments like the RECOVER Initiative are largely observational and not necessarily driving new research on ME/CFS, or POTS, or MCAS, which is really where I think the patient community wants the research to go in a much bigger way.
For his part, Krumholz has partnered with a Yale colleague, immunobiologist Akiko Iwasaki, PhD, on a large study to correlate clusters of Long COVID symptoms with specific signals from patients’ “immune signatures,” including chemokines and cytokines, T cells, and autoantibodies. The goal is to better understand the immune system’s role in Long COVID symptoms.
“We need to work as fast as we can with all deliberate speed,” Krumholz said, “making sure we’re doing good science but recognizing every day that passes, people are just suffering.”
The US Now Has a Research Plan for Long COVID—Is It Enough?
Тhe COVID-19 pandemic is the most significant medical and public health challenge the US has encountered in the last 100 years. As of July 26, 2022, an estimated 90 million cases of COVID-19 have been reported in the US, with an estimated 1 million COVID-19–related deaths. The current number of SARS-CoV-2 infections is difficult to estimate accurately, considering that many individuals with positive self-test results do not seek care or report their infection. At the same time, new coronavirus variants continue to emerge, with Omicron subvariants such as BA.5 and BA.4 now identified as the dominant circulating strains.
From the start of the pandemic, infected individuals exhibited different patterns of recovery. Some patients partnered with other groups of patients with similar or overlapping sets of symptoms and voiced their concerns to health care professionals, allowing recognition of what has been referred to as “Long COVID.”
The first group includes individuals with Long COVID and associated conditions. Long COVID already has affected a substantial number of people, and this number may continue to increase as new COVID-19 cases occur. Recent studies demonstrate the potential enormity of the problem for the US health care and public health systems. Long COVID can affect nearly every organ system and can manifest as new-onset chronic disease such as heart disease, diabetes, kidney disease, hematologic disorders, neurologic conditions, and mental health disorders.2
A 2022 study by the CDC that analyzed electronic health records and included 63.4 million individuals estimated that 1 in 5 adult COVID-19 survivors aged 18 to 64 years and 1 in 4 survivors aged 65 years and older have a health condition related to their previous COVID-19 illness.5 A parallel modeling study estimated that 4.3 million to 9.7 million US adults have new long-term symptoms that limit their daily activities after SARS-CoV-2 infection and that women may be disproportionally affected.6 Furthermore, based on self-reported data from 62 000 adults who participated in the Census Bureau’s online Household Pulse Survey in June 2022, 35.1% of those who reported having had COVID-19 (n = 25 049) reported experiencing Long COVID symptoms at some point and 18.9% reported having Long COVID symptoms currently.7 While estimates of incidence and prevalence of Long COVID vary across studies and settings, the breadth of symptoms and conditions that are manifestations of Long COVID and the potential cumulative health effects are consistent throughout the scientific literature.
Long COVID and associated conditions as well as the longer-term sequelae of the pandemic will continue to affect patients and families. The medical and public health community have made dedicated efforts during the last 2½ years to stopping the spread of this deadly coronavirus and have implemented prevention methods, developed treatments, and released vaccines that have been central to reducing initial COVID-19 infections and preventing Long COVID. It is important to focus a new lens on the pandemic and direct much-needed attention to Long COVID. Taking care of affected patients presents challenges given the incompleteness of research, the lack of sufficient diagnostics support, and pervasive problems with access to services.
As the research plan report notes, 5% to 30% of people develop Long COVID after SARS-CoV-2 infection, depending on the estimate. A study published after the plan was released estimates that 1 in 8 adults with SARS-CoV-2 infection experience Long COVID. The study’s investigators compared symptoms among people who had and hadn’t been infected and among individuals both before and after their infections, allowing for some of the most reliable estimates to date. Even at the lower end of the various approximations, millions of people in the US likely are living with 1 or more Long COVID symptoms for weeks, months, and sometimes years.
The new plan acknowledges that research is urgently needed to unravel the biological mechanisms that underpin the more than 200 symptoms and signs and 50 conditions attributed to Long COVID and to develop evidence-based treatments for them. But some say the plan—although a step in the right direction—touts already existing federal initiatives that are insufficient and slow-moving.
The plan defines Long COVID as “a multifaceted disease that can affect nearly every organ system” and can manifest as new or worsening chronic health problems, including but not limited to heart disease, diabetes, kidney disease, hematologic issues, and mental and neurologic conditions. The signs, symptoms, and conditions continue or arise anew 4 weeks or more after the initial symptomatic or asymptomatic infection and may be relapsing and remitting.
the pace and scope of the US government’s research response to Long COVID has been inadequate. “The slowness with which the NIH and the CDC are addressing this problem…is unjustifiable given the urgency of the problem,” he said. “This is equivalent to needing a vaccine, frankly. You’ve got millions, maybe more than 10 million people, afflicted with [Long COVID
Tulane School of Medicine clinical neurologist Michele Longo, MD, MPH, and a colleague opened a post-COVID care clinic in the fall of 2020, one of many such centers launched during the pandemic. The New Orleans–based clinic and more than 40 others are part of the PASC Collaborative, an initiative organized by the American Academy of Physical Medicine and Rehabilitation (AAPM&R). Longo said the collaborative’s members are excited and encouraged by the new research agenda. “The plan definitely addresses the requests that we’ve had for a whole-government response to Long COVID,” she said in an interview
She also highlighted the plan’s emphasis on equitable access to care. In her view, making sure care is available to all individuals with Long COVID should be the top priority. “We don’t want to see the same health disparities in care that we saw with acute management and treatment of COVID carry into the next public health crisis, which is going to be the care of people with Long COVID,” she said.
Some symptoms patients with Long COVID struggle with like fatigue and shortness of breath can be managed with energy conservation techniques and by taking frequent breaks from prolonged physical or cognitive activity. Physical therapists, occupational therapists, speech therapists, and behavioral health specialists all may have a role in symptom management. But patients first need to get in the door. Her clinic currently has a 4- to 6-month waiting list and elsewhere the delays can be even longer, despite many centers offering both in-person and telemedicine appointments. If access is to be improved, Longo said, Long COVID treatment must be integrated into primary care.
She and Meriquez Vázquez said that’s not currently the case. Meriquez Vázquez said: “The experience of many patients is still going into a doctor’s office, getting a ‘normal’ assessment, getting ‘normal’ lab work, and then being sent on their way.”
“Everybody who’s suffering from Long COVID has a right to be frustrated,” Krumholz said. Although some physicians still may not believe that Long COVID exists—the new research plan explicitly states that it does—others may be flummoxed by the array of nebulous symptoms patients describe, many of which have no biomarker-based tests.
The most frequent symptom is fatigue, according to Longo, and patients also commonly struggle with “brain fog”—problems with focus, memory, and word recollection—sleep disturbances, mood changes, headaches, loss of taste and smell, heart palpitations, dizziness, shortness of breath, cough, chest pain, diarrhea, stomach pain, joint or muscle pain, rashes, and pins-and-needles feelings.
The PASC collaborative and other groups are developing guidance to assist clinicians in treating these symptoms and improve patient care. So far, the PASC collaborative has released consensus guidance statements for fatigue, cognitive symptoms, breathing discomfort, and cardiovascular complications.
Meriquez Vázquez said that many primary care physicians, particularly those who serve the Medicaid population, aren’t aware that Long COVID can manifest as diagnosable conditions such as postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
“There’s definitely growing frustration that the information that does exist on these conditions is not being readily disseminated by public health out to clinicians, especially primary care,” she said. She noted that scientific efforts are also lagging: “For the most part big investments like the RECOVER Initiative are largely observational and not necessarily driving new research on ME/CFS, or POTS, or MCAS, which is really where I think the patient community wants the research to go in a much bigger way.
For his part, Krumholz has partnered with a Yale colleague, immunobiologist Akiko Iwasaki, PhD, on a large study to correlate clusters of Long COVID symptoms with specific signals from patients’ “immune signatures,” including chemokines and cytokines, T cells, and autoantibodies. The goal is to better understand the immune system’s role in Long COVID symptoms.
“We need to work as fast as we can with all deliberate speed,” Krumholz said, “making sure we’re doing good science but recognizing every day that passes, people are just suffering.”
What Is Long COVID?
A new US government research plan presents an interim definition of Long COVID. It broadly defines Long COVID as signs, symptoms, and conditions that continue or develop after initial COVID-19 or SARS-CoV-2 infection. The plan defines the signs, symptoms, and conditions as follows:
Are present 4 weeks or more after the initial phase of infection
May be multisystemic
May present with a relapsing-remitting pattern and progression or worsening over time, with the possibility of severe and life-threatening events even months or years after infection
The plan emphasizes that Long COVID is not 1 single condition. Instead, it represents many potentially overlapping entities that likely have different biological causes and different risk factors and outcomes.
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Date: 2022-08-16 12:04 am (UTC)no subject
Date: 2022-08-16 06:59 am (UTC)