Long COVID
Dr. Dilip Elangbam, MD, CMD, FACP
Gita Elangbam, BS
What is in the name?
Long COVID-19 Definition: The post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS -CoV–2 infection, usually three months from the onset of COVID- 19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction, but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID – 19 episode or persist from the initial illness. Symptoms also fluctuate or relapse over time. Through a large global consensus process, a working, clinical case definition of post-COVID–19 condition, from the following twelve domains, are now available to the public. A repository of published/available definitions of post-COVID-19 conditions can also be found here.
Risk Factors
However, the severity of symptoms or illness from COVID-19 do not translate into long COVID. It seems even the mild symptoms may lead to this invisible illness. This is more prevalent among people aged 35 to 69, women and people with underlying conditions, as well as those working in health and social care, and other people living in poorer areas.
In the Great Ormond Street Institute of Child Health, London, UK, researchers stressed that the risk of young people being infected with COVID-19 is “not trivial”, and said it was vital that children get the medical support that they need. It seems there are three types of long COVID due to the following pathogeneses:
On January 25, 2022 the Cell Journal published the article, “Multiple Early Factors Anticipate Post-Acute COVID-19 Sequelae,” written by Dr. Jason D. Goldman, Dr. James R. Heath, et al... The study included 209 people, ages 18 to 89, who were infected with coronavirus during 2020 or early 2021 and were seen at Swedish Medical Center or affiliated clinics under the guidance of Dr. Jason Goldman, an infectious disease specialist. The new research hints at four factors that may increase chances of long COVID. They are as follows:
Laboratory Testing as per CDC
Click here for basic diagnostic laboratory testing to consider for patients with post-COVID conditions.
Click here for more specialized diagnostic laboratory testing to consider patients with post-COVID conditions.
Click here for selected assessment tools for evaluating people with post-COVID conditions.
Click here for selected functional and other testing tools for evaluating people with post-COVID conditions.
Click here for descriptions of conditions similar to long COVID with their respective pharmaceutical and non-pharmaceutical treatments.
What is your gut feeling?
There are plenty of ACE 2 receptors in the gastrointestinal tract. When symptoms have improved, the presence of the virus can be detected by the RT PCR test, even without displaying any symptoms. There have been significant discussions on gut microbiome. For example, there is lower bacterial diversity in the gut after six months of infection in individuals with long COVID. Bifidobacterium adolescentis and Bifidobaterium longum boost immunity, and there is significant reduction of these species in people with long COVID. There is plenty of Streptococcus anginosus, Streptococcus vestibularis, Streptococcus gordonii, and lack of bifidobacterium species in people with respiratory symptoms. Neuropsychiatric symptoms and fatigue are associated with high amount of clostridium innocuans actinomces naeslundii in stool specimen. Also, there are more studies about COVID-19 affecting this microbiota-gut-brain axis. Beyond zinc, Vitamin C and vitamin D, most people are taking probiotics during this pandemic. Did it really help or just another hype? Ask Walmart and Amazon, maybe CVS. A recent study in Israel has aroused fresh comeback for Vitamin D for people in recovery as well as protection against infection of SARS-CoV-2 infection.
Cytokine storm, mast cell activation, direct cell damage, chronic hospitalization- post ICU Care syndrome, and interplay with immune and inflammatory markers; these are all proposed, sometimes substantiated, contributors to long COVID causes. Neurofibrillary tangles of Alzheimer's disease is now seen in people with long COVID, and people with “brain fog” have been telling all the while, something isn’t right. Their respiratory center in the brain stem is loaded with ACE 2 receptors and SARS-CoV-2 seems to populate it heavily. When CT scans and gas diffusion studies in the lung are all normal, if they are dyspneic, how much does the brain stem lesions contribute to dyspnea? When they lose their sense of smell, there are ample studies suggesting damage of olfactory nerves in the MRI. New auto-immune diseases may bring long-term rheumatological problems. No pun intended, this will be a long haul before we can fully grasp the situation.
Help is on the way
In December 2020, Congress provided $1.15 billion in funding over four years for NIH to support research into the long-term consequences of SARS-CoV–2 infection, which the NIH refers to as “post-acute sequelae of COVID -19(PASC).
The questions for this research are:
In the United Kingdom, the Post-Hospitalization COVID-19 study (PHSOP-COVID) aimed to follow 10,000 patients for a year, analyzing clinical factors such as blood tests and scans, and collecting data on biomarkers.
Currently, there are more than thirty Clinics across the US and have started the same mission. The findings will 2
be crucial in establishing guidelines for identifying and managing long COVID.
The Center for Disaster Philanthropy (CDP) and its partner Candid, a 501(c)(3) nonprofit organization that provides data tools to nonprofits, are tracking philanthropic donations to this outbreak. As of December 15, 2021, the total number of donations received stood at $26.7 billion. In the United Kingdom, the National Institute for Health Research (NIHR) announced in February 2021, that it was investing £18.5 million to fund four studies of long COVID-19. [16]
ICD-10 Code
In June 2021, AMA special meeting delegates adopted to support the development of an ICD-10 Code or family of codes to recognize Post- Acute Sequelae of SARS-CoV-2 infection (“PSAC” or “long COVID”) and other novel post viral syndromes as a distinct diagnosis.
Pandemic to endemic
The worldwide case total is 404, 550,122, with more than 5.8 million deaths and more than 324.46 million recoveries. The US case total is 78.83 million with more than 936,000 deaths and more than 49.22 million recoveries and current trajectory is to hit one million COVID-19 deaths by mid-March. According to New York Times, as of Feb 9, 2022, at least 1 in 4 US residents have been confirmed to be infected and at least 1 in 364 people in the country have died from COVID-19. Remember, 50 million died worldwide, including 675,000 in the US during the Great Influenza Pandemic of 1918.
On February 10, 2022 Lawrence O. Gostin, JD wrote “Life After the COVID-19 Pandemic” in JAMA that the trust in public health agencies declined significantly during the pandemic in the context of intense politicization over mitigation measures and confusing CDC guidance. That States have enacted more than 100 new laws limiting health emergency powers, banning mask or vaccination mandates, and limiting governors’ emergency powers. Despite this eroding trust in public health officials and their measures, the author believes a gradual transition to normal will likely occur, bringing back social activities that individuals have dearly missed.
“Am I happy about it? No”
Ed Young, winner of 2021 Pulitzer Prize for Explanatory Reporting, wrote the article “Long -haulers are redefining COVID-19” in The Atlantic on August 19, 2020. He is comparing COVID-19 today to the history of ME/CFS (myalgic encephalitis/chronic fatigue syndrome). For example, the long haulers are setting up their own support groups. They had to start running their own research projects. They have even found answers from each another. Support groups on Facebook have thousands of members. By not exactly understanding the sufferings of these individuals, healthcare providers are downplaying it as a psychological problem such as stress or anxiety that is especially bad for women, and even worse for women of color. This “medical gaslighting” still occurs. But this needs to stop.
Disabling fatigue, severe musculoskeletal pain, neurocognitive difficulties, and mood disturbance are hallmarks of post-viral illness. Some people with long COVID meet the criteria of ME/CFS according to Lucinda Bateman, founder of the Bateman Horne Center in Salt Lake City, Utah.
ME/CFS, itself, is a controversial illness. In 1988, CDC recognized this illness and gave it the radically misleading name, chronic fatigue syndrome. It took another thirty years until 2018 when the CDC retracted its support for Cognitive Behavior Therapy (CBT) and GET as part of the standard treatment, as well as the National Institute for Health and Care Excellence in the United Kingdom. There are at least 2.5 million individuals with this ailment. There are fifteen experts on this illness. However, there are no FDA approved drugs, no systems of care. After the pandemic, it is estimated that this number will double.
Should long COVID follow the same clinical pathway, we ought to understand the limitations of our knowledge, and make innovations for equal access, diversity, and inequality. Until that happens, physicians must have, as Nancy Klimas, MD, Director, Institute for Neuro-Immune Medicine, Nova Southeastern University, pointedly says, “the ability to say, ‘I don’t know’ rather than ‘there is nothing wrong with you.’ Some medical humility is a critical part of being a good doctor.” [15]
References
Dr. Dilip Elangbam, MD, CMD, FACP
Gita Elangbam, BS
What is in the name?
Long COVID-19 Definition: The post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS -CoV–2 infection, usually three months from the onset of COVID- 19 with symptoms that last for at least two months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction, but also others and generally have an impact on everyday functioning. Symptoms may be new onset following initial recovery from an acute COVID – 19 episode or persist from the initial illness. Symptoms also fluctuate or relapse over time. Through a large global consensus process, a working, clinical case definition of post-COVID–19 condition, from the following twelve domains, are now available to the public. A repository of published/available definitions of post-COVID-19 conditions can also be found here.
Risk Factors
However, the severity of symptoms or illness from COVID-19 do not translate into long COVID. It seems even the mild symptoms may lead to this invisible illness. This is more prevalent among people aged 35 to 69, women and people with underlying conditions, as well as those working in health and social care, and other people living in poorer areas.
In the Great Ormond Street Institute of Child Health, London, UK, researchers stressed that the risk of young people being infected with COVID-19 is “not trivial”, and said it was vital that children get the medical support that they need. It seems there are three types of long COVID due to the following pathogeneses:
- Direct cell damage
- Chronic hospitalization- post CU care syndrome
- Interplay of immune system and inflammatory markers
On January 25, 2022 the Cell Journal published the article, “Multiple Early Factors Anticipate Post-Acute COVID-19 Sequelae,” written by Dr. Jason D. Goldman, Dr. James R. Heath, et al... The study included 209 people, ages 18 to 89, who were infected with coronavirus during 2020 or early 2021 and were seen at Swedish Medical Center or affiliated clinics under the guidance of Dr. Jason Goldman, an infectious disease specialist. The new research hints at four factors that may increase chances of long COVID. They are as follows:
- Type 2 diabetes mellitus
- SARS CoV-2 RNAemia -
- level of coronavirus RNA in the blood early in the infection, as an indicator of viral load
- Epstein-Barr virus viremia
- Specific autoantibodies
Laboratory Testing as per CDC
Click here for basic diagnostic laboratory testing to consider for patients with post-COVID conditions.
Click here for more specialized diagnostic laboratory testing to consider patients with post-COVID conditions.
Click here for selected assessment tools for evaluating people with post-COVID conditions.
Click here for selected functional and other testing tools for evaluating people with post-COVID conditions.
Click here for descriptions of conditions similar to long COVID with their respective pharmaceutical and non-pharmaceutical treatments.
What is your gut feeling?
There are plenty of ACE 2 receptors in the gastrointestinal tract. When symptoms have improved, the presence of the virus can be detected by the RT PCR test, even without displaying any symptoms. There have been significant discussions on gut microbiome. For example, there is lower bacterial diversity in the gut after six months of infection in individuals with long COVID. Bifidobacterium adolescentis and Bifidobaterium longum boost immunity, and there is significant reduction of these species in people with long COVID. There is plenty of Streptococcus anginosus, Streptococcus vestibularis, Streptococcus gordonii, and lack of bifidobacterium species in people with respiratory symptoms. Neuropsychiatric symptoms and fatigue are associated with high amount of clostridium innocuans actinomces naeslundii in stool specimen. Also, there are more studies about COVID-19 affecting this microbiota-gut-brain axis. Beyond zinc, Vitamin C and vitamin D, most people are taking probiotics during this pandemic. Did it really help or just another hype? Ask Walmart and Amazon, maybe CVS. A recent study in Israel has aroused fresh comeback for Vitamin D for people in recovery as well as protection against infection of SARS-CoV-2 infection.
Cytokine storm, mast cell activation, direct cell damage, chronic hospitalization- post ICU Care syndrome, and interplay with immune and inflammatory markers; these are all proposed, sometimes substantiated, contributors to long COVID causes. Neurofibrillary tangles of Alzheimer's disease is now seen in people with long COVID, and people with “brain fog” have been telling all the while, something isn’t right. Their respiratory center in the brain stem is loaded with ACE 2 receptors and SARS-CoV-2 seems to populate it heavily. When CT scans and gas diffusion studies in the lung are all normal, if they are dyspneic, how much does the brain stem lesions contribute to dyspnea? When they lose their sense of smell, there are ample studies suggesting damage of olfactory nerves in the MRI. New auto-immune diseases may bring long-term rheumatological problems. No pun intended, this will be a long haul before we can fully grasp the situation.
Help is on the way
In December 2020, Congress provided $1.15 billion in funding over four years for NIH to support research into the long-term consequences of SARS-CoV–2 infection, which the NIH refers to as “post-acute sequelae of COVID -19(PASC).
The questions for this research are:
- What does the spectrum of recovery from SARS-CoV2 infection look like across the population?
- How many people continue to have symptoms of COVID-19, or even new symptoms, after acute SARS-CoV-2 infection?
- What is the underlying biological cause of these prolonged symptoms?
- What makes some people vulnerable to this but not others?
- Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such aschronic heart disease or brain disorder?
In the United Kingdom, the Post-Hospitalization COVID-19 study (PHSOP-COVID) aimed to follow 10,000 patients for a year, analyzing clinical factors such as blood tests and scans, and collecting data on biomarkers.
Currently, there are more than thirty Clinics across the US and have started the same mission. The findings will 2
be crucial in establishing guidelines for identifying and managing long COVID.
The Center for Disaster Philanthropy (CDP) and its partner Candid, a 501(c)(3) nonprofit organization that provides data tools to nonprofits, are tracking philanthropic donations to this outbreak. As of December 15, 2021, the total number of donations received stood at $26.7 billion. In the United Kingdom, the National Institute for Health Research (NIHR) announced in February 2021, that it was investing £18.5 million to fund four studies of long COVID-19. [16]
ICD-10 Code
In June 2021, AMA special meeting delegates adopted to support the development of an ICD-10 Code or family of codes to recognize Post- Acute Sequelae of SARS-CoV-2 infection (“PSAC” or “long COVID”) and other novel post viral syndromes as a distinct diagnosis.
Pandemic to endemic
The worldwide case total is 404, 550,122, with more than 5.8 million deaths and more than 324.46 million recoveries. The US case total is 78.83 million with more than 936,000 deaths and more than 49.22 million recoveries and current trajectory is to hit one million COVID-19 deaths by mid-March. According to New York Times, as of Feb 9, 2022, at least 1 in 4 US residents have been confirmed to be infected and at least 1 in 364 people in the country have died from COVID-19. Remember, 50 million died worldwide, including 675,000 in the US during the Great Influenza Pandemic of 1918.
On February 10, 2022 Lawrence O. Gostin, JD wrote “Life After the COVID-19 Pandemic” in JAMA that the trust in public health agencies declined significantly during the pandemic in the context of intense politicization over mitigation measures and confusing CDC guidance. That States have enacted more than 100 new laws limiting health emergency powers, banning mask or vaccination mandates, and limiting governors’ emergency powers. Despite this eroding trust in public health officials and their measures, the author believes a gradual transition to normal will likely occur, bringing back social activities that individuals have dearly missed.
“Am I happy about it? No”
Ed Young, winner of 2021 Pulitzer Prize for Explanatory Reporting, wrote the article “Long -haulers are redefining COVID-19” in The Atlantic on August 19, 2020. He is comparing COVID-19 today to the history of ME/CFS (myalgic encephalitis/chronic fatigue syndrome). For example, the long haulers are setting up their own support groups. They had to start running their own research projects. They have even found answers from each another. Support groups on Facebook have thousands of members. By not exactly understanding the sufferings of these individuals, healthcare providers are downplaying it as a psychological problem such as stress or anxiety that is especially bad for women, and even worse for women of color. This “medical gaslighting” still occurs. But this needs to stop.
Disabling fatigue, severe musculoskeletal pain, neurocognitive difficulties, and mood disturbance are hallmarks of post-viral illness. Some people with long COVID meet the criteria of ME/CFS according to Lucinda Bateman, founder of the Bateman Horne Center in Salt Lake City, Utah.
ME/CFS, itself, is a controversial illness. In 1988, CDC recognized this illness and gave it the radically misleading name, chronic fatigue syndrome. It took another thirty years until 2018 when the CDC retracted its support for Cognitive Behavior Therapy (CBT) and GET as part of the standard treatment, as well as the National Institute for Health and Care Excellence in the United Kingdom. There are at least 2.5 million individuals with this ailment. There are fifteen experts on this illness. However, there are no FDA approved drugs, no systems of care. After the pandemic, it is estimated that this number will double.
Should long COVID follow the same clinical pathway, we ought to understand the limitations of our knowledge, and make innovations for equal access, diversity, and inequality. Until that happens, physicians must have, as Nancy Klimas, MD, Director, Institute for Neuro-Immune Medicine, Nova Southeastern University, pointedly says, “the ability to say, ‘I don’t know’ rather than ‘there is nothing wrong with you.’ Some medical humility is a critical part of being a good doctor.” [15]
References
- Callard F, Perego E.. How and why patients made Long COVID. Social Science& Medicine.2021:268:113426
- Altman DM, Boyton RJ.. Decoding the unknowns in long COVID. BMJ.2021:372:n132
- Baig AM. Deleterious outcomes in long-Hauler COVID-19: The effects of SARS-CoV-2 on the CNS inchronic COVID syndrome.ACS Chem Neuroscience.2020:11(24):4017-4020
- Venkatesan P. NICE guideline on long COVID. The Lancet Respiratory Medicine. 2021:9(2):129
- NathA. Long-Haul COVID.Neurology.2020:95(13):559-560
- Brodin P. Immune determinants of COVID-19 disease presentation and severity.Nat Med. 2021:27(1):28-33
- Davido B, et al.. Post- COVID-19 chronic symptoms : postinfectious entity? Clin MicrobiolInfect.2020;26(11):1448-
- 1449
- Datta SD, Talwar A, Lee JT. A proposed framework and timeline of the spectrum of disease due to SARS-
- CoV-2 infection: illness beyond acute infection and public health simplification. 2020;324(22):2251-2252
- Mendelson M, Nel J, Blumberg L,et al.. Long - COVID: An evolving problem with an extensive impact.S AfrMed J. 2020;111(1):10-12
- Sivan M, Taylor S..NICE Guideline on Long COVID.BMJ 2020;371:M4938
- Nalbandian A, Sehgal K, Gupta A, et al .. Post-acute COVID-19 syndrome.Nat Med.
- 2020; 27(4):601-615
- Fernandez-de-Las-Penas C, Palacios- Cena D, Gomez-Mayordomo V, et al..Defining post- COVID symptoms( post-acute COVID, long COVID, persistent post-COVID): an integrative classification. Int J Environ Rs Public Health. 2021;18(5):2621
- Greenhalgh T, Knight M, ACourt C,et al.. Management of post acute COVID-19 in primarycare .BMJ.2020;370:m302614.Shah W, Hillman T, Playford ED, et al .. Managing the long term effects of COVID-19: summary of NICE,SIGN, and RCGP rapid guideline. BMJ.2021;372:n13615.Dorothy Wall, MA, The Importance of Listening in Treating Invisible Illness and Long Haul COVID -19,July 2021, AMA Journal of Ethics16.“£18.5 million awarded to new research projects to understand and treat long COVID,” National Institute ofHealth Research, https://www.nihr.ac.uk/news/185-million-awarded-to-new-research-projects-to-understand-and-treat-long-covid/26895, February 2, 2021