Long COVID continues to affect millions worldwide, yet there are no tangible solutions to address this emerging disease. According to the World Health Organization (WHO), the post-COVID-19 condition, commonly referred to as long COVID 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.
It is now estimated that between 10-30 per cent that have been infected with COVID-19 are experiencing dozens of unrelenting symptoms including but not limited to fatigue, brain fog and physical aches and pains. These lingering symptoms are reducing their quality of life and their ability to function at home, at work and/or socially. Furthermore, it is important to note that long COVID does not just affect those who were extremely ill with the coronavirus; some COVID-19 patients who have never had a serious illness are now dealing with chronic symptoms.
Long COVID does not just affect those who were extremely ill.
The medical profession does not yet fully understand what is causing these symptoms, and there has been a host of names suggested to describe it – long COVID, post-COVID syndrome, post-acute sequelae of COVID and long-haulers syndrome. Even though there are many symptoms associated with this syndrome, brain fog and fatigue are two of the most common and impairing symptoms.
Although COVID-19 has the capacity to infect anyone, research has identified risk factors pertaining to the development of long COVID. A gradient increase in age, female sex, hospital admission during acute COVID-19, symptom load and the presence of comorbidities like asthma is associated with a higher risk of developing long COVID. Thus, the post-COVID-19 condition is exceptionally prevalent among the older female population, individuals who developed severe pneumonia, showed signs of respiratory distress or required life-sustaining treatment, and those with pre-existing comorbidities. Additionally, recovery for individuals with multiple COVID-19 infections is further exacerbated by the persistent and gruelling symptoms of long COVID.
Long-haulers often are unsure how to handle their lingering symptoms since many organ systems are involved. After the resolution of the acute phase, many individuals find themselves suffering from a long list of difficulties – now exceeding 200 symptoms, says Roger McIntyre, psychiatry and pharmacology professor at the University of Toronto and executive director at Brain & Cognition Discovery Foundation.
An innovative study is underway that aims to help reduce and eliminate brain fog and fatigue in those experiencing long COVID. This study also aims to improve people’s day-to-day function and quality of life.
If you have been infected with COVID and are experiencing lingering symptoms, you might be a candidate for this study. Details can be obtained at www.bcdfoundation.ca. If you are interested in hearing more about your eligibility, please contact longcovid@bcdfoundation.ca. The study is open to persons 18 years of age or older who live in Canada.
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Free CME [pending approval]] Course: “Long Lyme/Co-Infections and Long COVID | What do they have in common?” Dr. John Lambert, [IN]VISIBLE: https://learn.invisible.international/courses/long-lyme-co-infections-and-long-covid/
Long-COVID and long-Lyme have moved physicians out of their comfort zone. The golden era of discoveries in medicine is over. Goldman Sachs have announced it’s official, shareholders are not interested in cures, new antibiotics or vaccines; they take too long and cost too much. There are no medical sleuths searching for the root cause of disease. Historically inflammation was usually found to be due to infection but the paradigm of modern medicine is to palliate with treatments that provide life-time annuities for the pharmaceutical industry.
Emergency room physician, Dr. Wes Ely has discussed this recently describing what happens when patients leave the ICU. Quite often that is not the end of their medical journey but the start of another into debilitating chronic disease. The interview was published in STAT News on October 10, 2022 titled: A doctor’s humbling journey treating long Covid: ‘The second we think we know what we are doing, we fall flat on our face.’ He was surprised that medical students are still of the understanding that fibromyalgia, ME/CFS and Lyme are fake diseases. MS was once known as fakers’ disease.
Patients want to be returned to health but the end point for researchers is usually different. It would be good if there were medical microbiologists and pathologists with advanced skills and lab access doing fine tissue research. It is now believed that many infections aren’t cleared by the body and immune system but survive in tissue reservoirs inside our own nerves and immune protected places only to remerge and re-infect later when triggered by another infection. The immune system can detect their presence but can’t clear the pathogens as has been demonstrated with Ebola. Unfortunately, no medical sleuths are being trained for this type of research. Biopsying living patients would be invasive and harmful. In medicine, the dead shall speak to the living, but autopsies are expensive and seldom done anymore unless violence or unexplained death were involved.
The planned research on long-COVID patients may be looking for predisposing genetic or environmental factors in the hopes of coming up with treatments. Many conditions are now controlled with powerful immunosuppressants that treat, but don’t cure disease. I recently asked a retired neurologist about the possibility that many cases of MS not only look like Lyme disease, they are Lyme. Both are demyelinating disease and look identical on an MRI. He misunderstood and said not to worry because they are coming out with new and better treatments all the time. The profits from these treatment pay for research, medical schools and political parties. How about some cures?
When physicians are looking for clues they search the blood. When they don’t find anything then the condition doesn’t exist and patients are given a diagnosis of medically unexplained symptoms or somatoform disease and nobody searches any further. Also, nowadays there are good tests for most diseases. The corollary of this for most physicians is that if there isn’t a test then the disease doesn’t exist.
The main problem is the long-term disability insurance industry doesn’t want to underwrite the cost of chronic disease. The insurance industry red-flagged Lyme and tick-borne disease to be too expensive to treat. A small cabal of powerful doctors colluded with the insurance industry to come up with a highly restrictive case definition based on a test they developed before they knew what they were dealing with. The doctors then confused the test with the disease. In addition, the test was based on a single New England strain of Borrelia bacteria. Since then we have found that strains vary across Canada and physicians have not been made aware that the test used here misses a third of those who are truly positive.
Infectious disease doctors are highly paid by the insurance to appear in court as expert witnesses to enable the insurance companies to decline payment for long-term health benefits from complex disseminated Lyme disease because they can’t pass the test or don’t meet the rigid case definition.
We have demonstrated from autopsy reports, that Lyme disease can persist in the brains and tissues of patients despite approved antibiotic treatments. These results are routinely ignored. We have demonstrated that long-term antibiotic therapy is effective in many cases but this has been ignored by PHAC who have prioritized the preservation of the antibiotic supply to returning Canadians to health.
We now have several separate diseases that appear to have common pathways. Dr. John Aucott and Alison Rebman wrote about this in a 2021 Lancet article. “Although the frequency, severity, and potentially the etiology of persistent symptoms can vary, sequelae after COVID-19 appears poised to join the range of other postinfectious syndromes described in the field of infectious diseases.
These often share a common symptom phenotype, which might also meet case definitions for myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, or post-treatment Lyme disease. We hope that researchers and clinicians will draw on these other conditions as they continue to advance scientific understanding of so-called long-haul or persistent COVID-19. We would also argue that there are important lessons to learn and pitfalls to avoid; our specific area of clinical care and research (post-treatment Lyme disease) has remained a fiercely contentious condition for more than 30 years.”
This reminds one of the parable of the 5 blind men examining an elephant. Specialists live and work in silos and it may just depend what lens they are using as to the diagnosis and treatment you receive.
Sincerely,
Dr. Rob Murray [DDS retired]
Lunenburg, NS
Board member Canadian Lyme Disease Foundation [www.CanLyme.org]