In this post, let’s cover what is Long Covid, how it first started, the difference between Post Covid and Long Covid, How many cases are there worldwide, and the incomplete symptoms list of Long Covid (you will understand as you read on).
For the latest COVID-19 news and information, visit Penn State's Coronavirus Information website. Continue to follow CDC-recommended health/safety precautions, contact your healthcare provider if you have questions or feel ill, and review information from state and national health authorities.
This presentation does not have a treatment, cure, or prophylactic for SARS-CoV-2 There are no products to cure or treat the virus at this time. This information does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment.
Never ignore professional medical advice in seeking treatment because of something you have read here. If you think you may have a medical emergency, seek immediate medical treatment.
There has been a new phenomenon emerging from the SARS-CoV2 infection known as “Long COVID”, “Long Haulers”, “long-haul COVID”, “Post COVID syndrome”, “post COVID-19 syndrome”,“chronic COVID-19” , “Post-acute sequelae of COVID-19 (PASC)”as well as “Microbiome post COVID syndrome, which we will talk about later. Thanks to social media Long Covid is the one most referred to. For this blog, it is also the terminology I will use to describe this concerning emerging conditon.
I was listening to one of my many online continuing educational courses and was busy getting dinner ready while the presenter was introducing himself. There was idle chitchat when suddenly, my ears perked in astonishment. He is an ER nurse and was talking about the amount of people coming into the ER saying they didn’t have shortness of breath, they just had to think about breathing. At this time, I had not really paid attention to the information on the virus that was taking over the nightly news.
I had been suffering with this type of breathing issue along with inability to breathe properly while sitting and found myself having to sing in order to help me to forget thinking about breathing. It was almost like it reset me. I also would wake up because I was not breathing. I had no idea these were symptoms of SARS CoV-2 because these symptoms were not showing up in the literature. The nurse went on to say, with these symptoms, it could be a very long haul back to proper health. The next day, I was scheduled to give blood. When I arrived, they tested my hemoglobin, and I was well below the healthy threshold to give blood
Low hemoglobin and breathing issues, for no apparent reason, I soon discovered I had been infected. What I didn’t know at the time, was the symptoms I had been dealing with for months, were recognized as Long Covid. I suffered in silence, not knowing others were also suffering. It has taken me over a year fighting to get my health back to where it was once.
I have written and recorded an informational video for health coaches and practitioners on Long Covid. I have presented the information on Long Covid in such a manner, that even if you are not a health professional, you too can watch this program. There was so much information on the complexities of Long Covid symptoms that I thought I would write about it here, just in case, the common symptoms are not what you have but the more complex ones.
I had been infected quite early, December 2019 right as I was healing with from Valley Fever. Talk about leaving the year on a low! By February 2020, I was having such odd symptoms and the breathing issues stayed with me for over a year. I had no idea they were attributed to Long Covid. I wish I had known earlier.
I am the type of person who just doesn’t look at the numbers and chalk anything up to what is being presented. I believe in researching for the underlying condition, which starts with understanding our unique physiology. But, for now, in this post I will stick to the foundation the “what” of Long Covid and the symptoms. I really do hope this helps you especially if you have been struggling with symptoms that no one has connected the dots for you.
How Did Long Covid start?
As much confusion as there is for SARS CoV-2 there is for Long Covid. It has come to be understood once infected with the virus, the recovery was about 2 weeks later. Many were turning to social media as early as March 2020 to discuss symptoms they were experiencing well after the infection recovery time. It was then discovered by news media, and then various clinical media picked it up from there. In your search operating system type in "Long Covid" and you will see numerous academic papers on the phenomena.
Frequency of reported ongoing symptoms in survey participants (n=2526)
Ziauddeen N, Gurdasani D, O’Hara ME, et al. Characteristics of Long Covid: findings from a social media survey. medRxiv; 2021. DOI: 10.1101/2021.03.21.21253968.
Doctors understood the viral infection could lead to chronic illness but exploring this was not a priority. “At the beginning, everything was acute, and now we’re recognizing that there may be more problems,” according to Helen Su, an immunologist at the National Institute of Allergy and Infectious Diseases in Bethesda, Maryland. “There is a definite need for long-term studies.”
What is the difference between Long Covid and Post Covid?
This is a tough one to answer, because the information is still being collected. Although there are tons of studies pouring in, the distinction between post COVID and long COVID is blurred, due to a temporal evaluation only.
According to Elsevier Public Health Emergency Collection May-June 2021 publication Diabetes metabolic Syndrome (published April 2020; Long Covid: An Overview “Long COVID is the collective term to denote persistence of symptoms in those who have recovered from SARS-CoV-2 infection”.
The difference between Long Covid versus Post Covid according to Elsevier Public Health Emergency Collection; Post COVID syndrome is the time lag between the microbiological recovery and clinical recovery. The majority of people with post-COVID syndrome are PCR negative, indicating microbiological recovery. “Long COVID can be divided into two stages-post acute COVID where symptoms extend beyond 3 weeks, but less than 12 weeks, and chronic COVID where symptoms extend beyond 12 weeks.
Classification of long COVID | Diabetes Metab Syndr. 2021 May-June; 15(3): 869–875. Published online 2021 Apr 20. doi: 10.1016/j.dsx.2021.04.007
Looking at insurance records of nearly 2 million people who were diagnosed with COVID-19, researchers found that 23% of people of all ages developed a condition 30 days or more after infection. According to The National Institute for Health and Care Excellence (NICE), the Scottish Intercollegiate Guidelines Network, and the Royal College of General Practitioners use the following terms to characterize different stages of post–COVID-19 condition;
Research group from Spain proposed the following groupings;
Long Covid Frequency is still being researched as the symptoms keep coming in. According to JAMA Systematic Review looking at the short term and long term rates of SARS-CoV-2 infection showed that at least 50% of people who have been infected with and survived COVID-19 will continue to suffer from symptoms for 6 months or longer.
Other institutions worldwide have defined Long Covid into subtypes;
The short answer for what is Long Covid according to JAMA Network;
“Long COVID is the collective term to denote persistence of symptoms in those who have recovered from SARS-CoV-2 infection beyond the acute infection phase 4 weeks after being infected.”
What has been established so far, it will take researchers at least 5 years to understand the long-term health impact of SARS-CoV-2 as we are the cohort for COVID and for Long Covid drug trials.
How many Long Covid cases are there worldwide?
The prevalence of Long Covid is quite extraordinary. According to Penn State College of Medicine researchers, more than half of the 236 million people who have been diagnosed with COVID-19 worldwide since December 2019 will experience post-COVID symptoms -- more commonly known as 'long COVID' -- up to six months after recovering.
How frequent is long covid? Another study, “Global Prevalence of Post-Acute Sequelae of COVID-19 (PASC) or Long COVID: A Meta-Analysis and Systematic Review”, researchers at the University of Michigan examined the prevalence of post-acute sequelae of COVID-19 (PASC) across the world to provide prevalence. Looking at 886,000 patients who tested positive for COVID-19, overall, the research team found that global prevalence of long COVID was about 43%. Among patients who needed hospitalization, the prevalence increased to 57%, between the sex, 49% among women and 37% among men.
According to WebMD quoting World Health Organization on long covid frequency, estimate of 237 million worldwide COVID-19 infections in mid-October, more than 100 million people still experience or previously had long-term health consequences from the coronavirus, the researchers calculated.
Penn State research looked 57 systematic reviews which included data from 250,351 unvaccinated adults and children who were diagnosed with COVID-19 from December 2019 through March 2021. Among those studied, 79% were hospitalized, and most patients (79%) lived in high-income countries. Patients' median age was 54, and the majority of individuals (56%) were male.
The researchers analyzed patients' health post-COVID during three intervals at one month (short-term), two to five months (intermediate term) and six or more months (long-term). According to the findings, survivors experienced an array of residual health issues associated with COVID-19. Generally, these complications affected a patient's general well-being, their mobility or organ systems. Overall, one in two survivors experienced long-term COVID manifestations. The rates remained largely constant from one month through six or more months after their initial illness.
In the beginning, some thought long covid was nothing but a psychosomatic phenomenon. After turning to social media to share their experiences and then the review of over a year’s worth of data; these studies proved Long Covid is not psychosomatic like some believe.
Approach to patients with Long COVID | Diabetes Metab Syndr. 2021 May-June; 15(3): 869–875. Published online 2021 Apr 20. doi: 10.1016/j.dsx.2021.04.007
What are the symptoms of Long Covid?
The early lack of awareness of the range of symptoms associated with Covid19 meant that many people did not associate their symptoms with Covid19 and therefore did not associate their enduring symptoms with Long Covid.
Long Covid symptoms vary from person-to-person. A 2020 follow up after discharge from a Paris hospital report that 64% of respondents reporting a period of wellness before relapsing, 76% presented new symptoms that were absent during the acute phase of their Covid19 infection. 86% of respondents experienced relapses occurring in an irregular pattern, or in response to specific triggers (such as physical or mental activity, stress, menstruation, heat, or alcohol).
Long Covid can affect anyone – old and young, otherwise healthy people and those battling other conditions. The list of long COVID symptoms is long, wide and inconsistent. For some people, these lasting symptoms are nothing like the original COVID-19 symptoms.
Long covid without initial symptoms can occur, whereas the same can happen with severe symptoms of the initial SARS CoV-2 infraction. One can have one, some or numerous overlapping symptoms, some may start with a couple and over time, have more symptoms. Some people may be suffering with more than one syndrome at the same time.
According to the CDC As of July 2021, “long COVID,” also known as post-COVID conditions, can be considered a disability under the Americans with Disabilities Act (ADA).
National Institute for Health Research Review (NIH) found there are 205 different symptoms related to Long Covid leading to the bundled name of “Corona coaster.” According to the NIH the common symptoms were identified into two categories;
According to the CDC Multi-organ system effects of COVID-19 have been documented in most, if not all, body systems including cardiovascular, pulmonary, renal, dermatologic, neurologic, and psychiatric along with multi-system inflammatory syndrome (MIS) and autoimmune conditions. To date, the most commonly reported persisting symptoms include:
These may be the more common symptoms of Long Covid, leaving you thinking you may not fall within the parameters. Think again, there are other symptoms associated with this critical emerging condition.
Long-term effects of coronavirus disease 2019 (COVID-19). The meta-analysis of the studies included an estimate for one symptom or more reported that 80% of the patients with COVID-19 have long-term symptoms. CRP C-reactive protein, CT computed tomography, IL-6 Interleukin-6, NT-proBNP (NT)-pro hormone BNP, OCD Obsessive Compulsive Disorder, PTSD Post-traumatic stress disorder. This figure was created using Biorender.com | Lopez-Leon, S., Wegman-Ostrosky, T., Perelman, C. et al. More than 50 long-term effects of COVID-19: a systematic review and meta-analysis. Sci Rep 11, 16144 (2021). https://doi.org/10.1038/s41598-021-95565-8
Long Covid Parosmia (Pernio)
During the acute infection phase of SARS CoV-2 was the loss of taste and smell. Most recovered from this condition without any long term effects. For others, this was not the case. Parosmia is a condition which cause normal or familiar pleasant smells to now smell unpleasant or even of disgust.
This olfactory disorder is considered a rare occurrence; however, it is coming into the spotlight for some suffering with Long Covid, now known as Long Covid Parosmia. Potential cause of parosmia includes upper respiratory infections. Viruses can lead to olfactory dysfunction by causing damage to the upper respiratory tract and olfactory neurons. Although researchers are still trying to understand the relationship between the virus infection, long covid and parosmia, what they do note is that COVID-19 vaccine cannot cause parosmia.
Covid toes is a skin condition that can also affect the fingers. What causes covid toes has yet to be determined. The symptoms of covid toes includes the skin on one or more toes or fingers swell up, may start with looking bright red, the gradually turn purple and may have brownish-purple spots. Covid toes can last 10-14 days, for some, the symptoms may persist for months.
According to the American Academy of Dermatology Association for some with covid toes, may develop blisters or a small amount of pus under the skin. There may also be;
Dermatology registries created during the COVID-19 pandemic have collected more than 8000 cases since they opened for case reporting in March and April of 2020. In multiple states, COVID toes are now part of their testing criteria and have served to highlight the importance of dermatologic data for characterizing the different phenotypes of COVID-19.
A JAMA research letter from Italy found that 87% of people recovered and discharged from hospitals showed persistence of at least one symptom even at 60 days. Long covid quality of life was also assessed on the questionnaire finding a difference of 10 points defined worsened quality of life (44.1% ).
Other commonly reported problems include;
Other symptoms reported also included;
Patients also reported inability to do routine daily activities, in addition to mental health issues such as anxiety, depression and post-traumatic stress.
According to a white paper initiated by A FAIR Health White Paper, June 15, 2021 “A Detailed Study of Patients with Long-Haul COVID. An Analysis of Private healthcare Claims” found the five most common post-COVID conditions across all ages, in order from most to least common, were;
Table 2. Top 15 Post-COVID conditions by age group ranking, March 2020-February 2021 | A Detailed Study of Patients with Long-Haul COVID. An Analysis of Private Healthcare Claims. A FAIR Health White Paper, June 15, 2021
According to Mayo Clinic more severe symptoms of long COVID include damage to other organs including the brain, heart and lungs, as well as blood clots or blood vessel problems.” According to Washington University School of Medicine in St Louis and the Veterans Affairs St. Louis Health Care System are urging attention to kidneys to be an important part of post-COVID-19 care. Their research shows that people who have had COVID-19, including those with mild cases, are at an increased risk of developing kidney damage as well as chronic and end-stage kidney diseases. Senior author Ziyad Al-Aly, MD, an assistant professor of medicine at Washington University states;
“If kidney care isn’t an integral part of COVID-19 post-acute care strategy, then we will miss opportunities to help potentially hundreds of thousands of people who have no idea that their kidney function has declined due to this virus. This is in addition to the millions of Americans who suffer from kidney disease not caused by COVID-19.”
Having regular blood work that includes glomerular filtration rates (GFR) or (eGFR), BUN and creatinine
can help a doctor to determine level of kidney function. In the same Washington University School of Medicine study found after the initial 30 days of COVID-19 infection, 4,757 (5.3%) of the patients experienced a decrease of 30% or more in glomerular filtration rates (GFR). People who had milder COVID-19 cases had 1.09 times the risk of having an estimated GFR decline of 30% or more. For hospitalized COVID-19 patients not in intensive care units, there was two times the risk of having an estimated GFR decrease of 30% or more, while intensive care unit patients were at three times the risk of experiencing an estimated GFR drop of 30% or more.
A collection of more studies have shown the following Long Covid symptoms including;
Kidney damage, kidney abnormalities
Postural orthostatic tachycardia syndrome (POTS)
Inflammation of the heart muscle, lung function
Depression, anxiety and mood swings
Brain Fog, forgetfulness
Hair loss (alopecia) [54, 55, 56}
COVID-19 interstitial pneumonia
Disrupted sleep, insomnia
Gastrointestinal pain, stomach pain, diarrhea
Loss of taste and smell
Ringing in their ears
Skin issues (e.g., rash), dermatological issues
Another study showed common symptoms in people with “Long COVID” are profound fatigue, breathlessness, cough, chest pain, palpitations, headache, joint pain, myalgia and weakness, insomnia, pins and needles, diarrhea, rash or hair loss, impaired balance and gait, neurocognitive issues including memory and concentration problems and worsened quality of life.
According to Penn State College of Medicine researchers have found several trends among Long Covid such as:
This is by no means a complete or final count of Long Covid symptoms for “long haulers.” Long Covid can result in prolonged illness, even among young adults without underlying chronic medical conditions and doctors do not know when the symptoms will subside.
If you are experiencing Long Covid symptoms, do not hesitate to reach out to your physician. Keep track of your symptoms with dates to help your doctor determine the best course of health for you. And if you are not being listened to, then you keep going until you find a doctor that will believe you. This is not in your head. There are more than 100 million people worldwide with Long Covid symptoms. You are not alone!
If you would like to learn more about What Long Covid is all about, this on demand webinar is for you. The 1:45 minute on demand video broken down into relevant parts for you to easily watch at your convenience on any device at any time. Download full size slides, and all supporting material. All references are hyperlinked for your convenience. You will not find a more comprehensive program specifically targeted at understanding the nutritional support connection to Long Covid and what it entails. Includes Serum panel checklist, Polyphenol chart, additional reference material related to video. You can check it out here.
If you would like to get back on track and just feel good again, reach out via email HelloKarenLangston@gmail.com or call me (347) POO-WELL (347 766-9355)
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2/13/2022 01:38:45 pm
I just wanted to say wow and thank you! This blog on Long Covid is really thorough. I have not seen any other blogs with this much stuff on long covid. I thought I was going crazy because I was suffering with weird symptoms. I just have not felt right since i had covid. I kept going to my doctors and she did not know what to do. so thank you for this.
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