“It’s kind of like in Harry Potter, when the dementors come and they suck away all of your energy,” says Kathleen Dennis, a former Toronto health-care worker living with a condition called myalgic encephalomyelitis, or ME/CFS.
ME/CFS is a misunderstood complex multi-system chronic illness usually triggered by a viral or bacterial infection. It’s estimated to affect more than 600,000 Canadians, making it more common than breast cancer, Parkinson’s disease and multiple sclerosis combined. Though not exclusive to COVID-19, the pandemic has exacerbated the situation as more people become infected, and re-infected.
ME/CFS’s hallmark symptom, post-exertional malaise (PEM), also known as post-exertional symptom exacerbation, can affect people differently, but is generally defined as the worsening of symptoms after even minor physical or mental activity. Symptoms triggered by PEM can start 12 to 48 hours after exertion and leave even mild and moderately ill patients bedridden with debilitating “crashes” that can last for weeks or months at a time.
“For me it feels like a combination of being hit by a bus and somebody kneeling on my chest,” Dennis says. “Then it literally feels like all the tendons, bones, muscles and blood are being sucked out of my body.”
During the height of her career, Dennis travelled the world working with organizations like Doctors Without Borders. Then in 2012, she contracted West Nile virus in her Toronto backyard – an irony she says is not lost on her. The infection was followed by myriad debilitating symptoms, including extreme physical and cognitive fatigue, musculoskeletal pain and poor sleep. After six years of declining health and setbacks from a respiratory infection, Dennis was finally diagnosed with ME/CFS in 2018 after her illness forced her to stop working. “I had such bad muscle weakness. I couldn’t even use a knife to cut my food,” she says.
She’s one of many who wait an average of five years for a proper diagnosis, a process delayed by a number of factors, including the absence of biomarker testing for the condition.
Despite its prevalence and life-limiting symptoms, ME/CFS is unlikely to be found in most medical school textbooks or curriculums across the country. Research has been underfunded and for decades the illness has been largely dismissed as psychiatric in nature. Women make up roughly 80 per cent of those with the illness, which experts say has likely contributed to its stigmatization and general dismissal.
For decades, official guidance in Canada has recommended exercise and cognitive behavioural therapy to treat ME/CFS. Researchers have now confirmed what many patients have voiced for decades: exercise actually causes ME/CFS symptoms to worsen, often leading to significant and disabling setbacks. The National Institute for Health and Care Excellence (NICE) in the U.K. only revoked their recommendation for clinical guidance for a treatment known as graduated-exercise therapy in 2021, after years of patient advocacy.
There is currently no known cure for ME/CFS. And with the exception of a handful of specialists scattered throughout the country, little meaningful support for patients outside of online peer-support groups.
But research interest in ME/CFS and other similar illnesses is growing as post-viral conditions have become even more common during the pandemic. Recent reports show that in Canada, 30 to 40 per cent of patients who were not hospitalized from SARS-CoV-2 experience symptoms 12 weeks post-infection. A further 10 to 30 per cent of those infected with SARS-CoV-2 report persistent neurological and other symptoms after six months. A recent study found that 58 per cent of long COVID patients surveyed met the scoring threshold for PEM, meaning more than half of those with long COVID meet the diagnostic criteria for ME/CFS and suggesting that in many instances, these illnesses are likely one in the same.
More than half of those with long COVID meet the diagnostic criteria for ME/CFS.
Alain Moreau of the Open Medicine Foundation has been working to answer some of the biggest unknowns about complex chronic illnesses. Moreau is also a part of ICanCME research network, a group aiming to fill research gaps in ME/CFS, attract more research interest and offer grant opportunities. Dennis is among a dedicated group of ME/CFS patients who have been working with Moreau on the frontlines of this research.
The research Moreau and his team in Montreal have generated over the last two years in particular signal hope for ME/CFS and long COVID sufferers alike.
Moreau and his team began cataloguing biomarkers in patients with ME/CFS using an innovative method that evokes PEM for measurement. Using a cuff that applies gentle pressure for 90 minutes, Moreau’s researchers induce a controlled PEM response in some of the most severe ME/CFS patients. “For a normal person, it would just feel like a gentle massage but for someone with severe ME/CFS, 90 minutes of stimulation on the upper arm would feel like running a marathon.” The longitudinal study measures several physiological changes including heart rate, respiration and impact on sleep, as well as other biomarkers such as urinalysis and protein level in plasma.
The results have been significant.
“From that, we were able to identify who has ME/CFS, and also further stratify into four clusters that predict disease severity,” Moreau says. He theorizes that ME/CFS exists on a spectrum that we can objectively measure even though it has many different triggers in addition to a number of overlapping co-morbidities like fibromyalgia, mast cell activation syndrome and postural tachycardia syndrome.
Moreau’s research takes a close look specifically at the role of microRNA, a family of molecules that helps cells control the kinds and amounts of proteins they make. Moreau says microRNA are becoming increasingly popular in medicine, not only in detecting but staging disease to determine its extent and course of treatment, for example using liquid biopsies in oncology. For his purposes, Moreau uses microRNA to determine genetic differences between different ME/CFS patients and has created diagnostic testing that can differentiate ME/CFS from other similar illnesses.
“We found that by looking at these panels of 11 microRNA, you can pinpoint a specific target that may explain something like physical and mental fatigue and other dysfunctions that affect the mitochondria and create sleep disturbances,” Moreau says.
Stratifying different subgroups within the larger umbrella diagnosis of ME/CFS is about building an empirical foundation for measuring the illness that hasn’t existed before, Moreau says. This will allow more researchers to gain footing in the field and produce effective clinical trials. It will also help address some of the most glaring issues in research funding.
“We need to understand and identify actionable therapeutic targets where we can reposition drugs, or at least define a more mechanistic approach,” he says. Without this knowledge, it’s really difficult to design a viable clinical trial and to attract pharmaceutical biotechs to the field.
“With these biomarkers we can predict who might respond well to certain kinds of treatment and who would not. If we can show (pharmaceutical companies) that we can pinpoint a group or subgroup of patients that could benefit from a certain type of therapy, they’ll be more likely to invest.”
Moreau’s team is currently working on a single blood test that would be able to differentiate patients with ME/CFS from those with fibromyalgia and indicate who has one or both conditions.
Moreau’s work is also moving to include the application of these biomarkers to long COVID.
“I really want to build a foundation of solid science, so we know how to target the most debilitating symptoms. That’s why we need to engage in the field of precision medicine for ME,” says Moreau.
While ME/CFS patients like Dennis have lived unaided with post-viral illnesses for decades, Dennis says that she sees the emergence of long COVID as a sort of “terrible silver lining.”
“We still have a long way to go, especially in Canada,” she says. “But I think (the pandemic) will make a big difference. There’s no doubt that we are starting to hear physicians and researchers use the terms ME and long COVID together now.”
Says Moreau: “The COVID-19 pandemic has unfortunately created this huge opportunity. Let’s leverage that for the sake of millions of individuals.”
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Cause and Cure the long COVID/CFS/ME
Doctors, pharmacists and researchers are dealing with human diseases. The most important metabolism in humans is that the brain controls the entire body with electrical signals. Unfortunately, doctors, scientists, pharmacists, etc. study and deal with many diseases, but are completely unaware of the electrical control of the brain.
In order to sustain life, the respiratory system, the circulatory system, the muscular system, the nervous system, and the digestive system must be organically controlled. The brain controls the operation of all organs by producing electrical brain signals and transmitting them through the neural network, just like the previous game. The brain is interfered with by external electricity or electromagnetic waves, static electricity, negative charges, etc. in the production or transmission stage of brain signals, and the brain signals are altered and transmitted to organs. The corrupted information appears as a malfunction and becomes an invisible disease. Impaired control of the digestive system can lead to intestinal disorders such as IBS. When EMR interference occurs in a part of the brain itself, autism, ADHD, depression, growth disorders, and eating disorders occur.
If the digestive system, respiratory system, muscular system, nervous system, and circulatory system are all malfunctioning due to severe electromagnetic interference, various organs become diseased and the exhaustion of fatigue substances is slowed, leading to CFS state.
When a patient with CFS drinks less water, it becomes high uric acid, which causes severe pain like gouts, and becomes ME.
Long COVID is a phenomenon that occurs frequently when a patient with a chronic disease (underlying disease) becomes infected with COVID because about three of the digestive, respiratory, circulatory, nervous, and muscular systems malfunction. When a virus penetrates and multiplies in an organ, a fierce war occurs with the immune system, and the immune system-virus body or metabolites are produced in large quantities, acting as if the control in the brain is disturbed. So, it is long COVID that aggravated the chronic disease state, which was broken down in three or so, to the CFS/ME state in which all five were broken.
The key to treatment for these invisible diseases is to get them out of the exposure environment such as electromagnetic waves. In other words, it is difficult to access with drugs, injections, or doctors.
Next, tuning (BBT) of the brain-body control system is additionally required.
BBT is the process of cleaning the inside of the body by forcibly removing wastes attached to the brain, neural network, and organs.
This method can also be used to treat or prevent COVID-19.
CFS/long COVID can be cured in 1-2 weeks.
If you search for brain and EMR or ME and uric acid, you will find a lot of literature.
Infectious diseases were discovered around 1800, and penicillin was commercialized in 1945, opening the way for treatment.
Invisible diseases such as CFS/ME/psychosis have already been published in many papers. Among them, the most important electromagnetic wave is not an artificial one, but the geopathic zone, which is a earth electromagnetic wave that is widely distributed in our beds, houses, and offices. If you sleep on the geopathic zone, you will be exposed to electromagnetic waves for a long time every day and become an invisible disease.
Changing the position of the bed is the key to treatment. Next, you can clean the wastes of the human body just like cleaning the pipes or engines of devices such as automobiles with dust or dirt. Periodically, the human body needs to do BBT like a machine to maintain health.
Just as the medical revolution was achieved with the introduction of antibiotics from infectious diseases
For invisible diseases, environmental control and introduction of BBT are the only solutions.
Konjoo Lee phD (1983)
Carol Stream IL
I would love to share but can’t promote the outdated and insulting term PEM :-(
The current term is PENE – post-exertional neuroimmune exhaustion.
Long-COVID has certainly knocked physicians out of their comfort zone. Historically most disease was found to be caused by infection and there is another school of thought that the microbes that might be causing ME/CFS or Lyme disease and perhaps the virus responsible for COVID survive in hidden tissue reservoirs in the body. The immune system can detect but not remove them. Infections such as Ebola can lie dormant until another acute infection reactivates them.
Shareholder values control medicine these days and in 2018 Goldman Sachs announced that cures are no longer profitable. The paradigm of modern medicine is to palliate with treatments that provide life-time annuities to the pharmaceutical industry. These profits pay for research, medical schools and political parties. Physicians are no longer interested in searching for the root cause of disease. The neurologist is not interested in what is causing your MS, nor is the rheumatologist in what’s causing your rheumatoid arthritis because they are coming out with new treatments all the time. How about some cures?
Doctors tend to rank diseases and those at the top such as brain, liver and pancreatic cancer strike without warning and kill quickly and its this type of disease they are on the lookout for. Unfortunately, invisible debilitating diseases that don’t have clearly defined measurable symptoms and lack accurate tests such as ME/CFS and Lyme are research disadvantaged are placed at the bottom. Medical students are still graduating with the impression that conditions such as ME/CFS, Lyme and long-COVID aren’t real because they lack of a test. The Lyme test used in Canada misses at least a third of those that truly do have the disease but doctors have not been made aware of this.
In the case of ME/CFS they don’t know what they are looking for and looking in the wrong places. Doctors look in the blood and when they don’t find anything then by default, it is labelled a somatoform disorder and no one searches any further. Psychiatrist, Dr. Robert C. Bransfield tells his Lyme patients “of course you are sick, your brain is infected.” Borrelia responsible for Lyme demonstrate tissue tropism and can target different organs or the CNS depending on the strain. Infectious disease doctors are very uncomfortable with microorganisms that can cause neurological disease. In medicine, the dead shall speak to the living but autopsies are expensive and seldom done anymore. Fewer doctors are going into infectious disease perhaps due to the “Fauci” effect from all the death threats he and his family endured. No pathologists are being trained with microbiological lab skills to answer these important questions.
This situation should remind of us of the 5 blind men examining an elephant. Specialists work in silos, each examining these patients through their own lens. Microbiologist Amy D Proal [PhD] and the PolyBio Research Foundation is managing to break through these silo walls. Several diseases are caused by very different organisms but have common pathways. She explores several of these with various experts on her YouTube channel .
Long COVID or Post-acute Sequelae of COVID-19 (PASC): An Overview of Biological Factors That May Contribute to Persistent Symptoms, Proal AD, VanElzakker, Front. Microbiol. 12:698169; 2021-06-23: doi: 10.3389/fmicb.2021.698169
Chronic fatigue syndrome from vagus nerve infection: a psychoneuroimmunological hypothesis, VanElzakker MB, Med Hypotheses  414-23 Sep;81(3): doi: 10.1016/j.mehy.2013.05.034. Epub 2013-06-19. PMID: 23790471.
Neuroinflammation and Cytokines in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), A Critical Review of Research Methods, VanElzakker MB, Brumfield SA, Lara Mejia PS, Front Neurol 9:1033. https://doi.org/10.3389/fneur.2018.01033
Post-infectious fatigue and your vagus nerve, Marcum L, Lyme Sci, Lymedisease.org 2021-11-03: https://www.lymedisease.org/post-infectious-fatigue-vagus-nerve/
• Vagus nerve infection hypothesis
The vagus nerve infection hypothesis theorizes that the chronic flu-like symptoms of ME/CFS are an exaggerated version of normal sickness behavior triggered by infection of the vagus nerve.
In theory, any infectious agent with a preference for nervous tissues (neurotropic) can cause a vagus nerve infection, including Borrelia.