Is Long Covid = ME/CFS?

Dr. Martina Melzer, published: 03/17/2022


Long Covid is the silent pandemic within the pandemic. According to the Robert Koch Institute (the „CDC“ in Germany), two to 20 percent of people who contract Covid-19 continue to struggle with symptoms months after infection. Individual studies arrive at much higher percentages.

As a person with ME/CFS, I, like many other affected people, ask myself the question: is Long Covid the same as ME/CFS?


Infections are a typical trigger

In Long Covid, the trigger is clear: Sars-CoV-2, but ME/CFS, POTS, and related syndromes are also often caused by infection. The U.S. organization Solve ME/CFS writes: in ME/CFS in up to 80 percent of cases. Typical pathogens include: Herpes viruses such as EBV, cytomegalovirus and HHV-6, coronaviruses such as MERS and Sars-CoV-1, as well as West Nile virus, Ross River virus, enteroviruses, Borrelia and Candida fungi.


Symptoms overlap

With few exceptions, the symptoms of Long Covid closely resemble those of ME/CFS. These include upon others: Fatigue, concentration and thinking problems, headaches, muscle and/or joint pain, sleep disturbances, muscle weakness, hair loss. Excessive physical, emotional or mental activity worsens the condition in both syndromes. More specific to Long Covid include shortness of breath, taste and smell disturbances.


What could lead to Long Covid?

Although there are numerous studies on this, the disease mechanism is not yet clear. It is now known that Sars-CoV-2 can damage many organs and tissues - from the heart, kidneys, lungs and blood vessels to the digestive tract, brain and central nervous system.

There is evidence of an overactive and faulty immune system, for example pro-inflammatory messenger substances (cytokines) and antibodies directed against the body's own tissue (autoantibodies).

Persistent inflammatory reactions can be detected in various tissues, including the brain. This could disrupt various regions of the brain, such as the brain stem. Many nerve tracts of the central nervous system run through it. For example, nerve cords that control movements and reflexes and process senses such as sight, hearing or touch. The vagus nerve, the calming part of the autonomic nervous system, originates in it. However, the vagus is also triggered by inflammatory messengers and then triggers the typical sickness behavior in the brain with exhaustion, fatigue, fever, muscle pain and the need to rest.

Parts of the hypothalamus may also be misaligned by Covid-19. It is an important control center in the brain and controls, among other things, the functions of the autonomic nervous system (consisting of the sympathetic and parasympathetic/vagus nervous systems) and the hormonal system - and thus all involuntary bodily functions. The stress axis starts here: the HPA axis (hypothalamic-pituitary-adrenal axis). Inflammation triggered by a virus, for example, activates this axis and initiates the stress response to infection - the sympathetic nervous system is activated, which is the activating part of the autonomic nervous system. This, in turn, alters immune functions.

The hypothalamus is in close communication with the limbic system, the emotion center in our brain. This also seems to be out of kilter due to Sars-CoV-2. This could explain, among other things, why Long Covid causes not only physical discomfort but also psychological issues. The limbic system also constantly scans whether we are "safe" or not and evaluates sensory stimuli. An infection is clearly an attack on our "safety" and can potentially endanger our survival.

So could Covid-19 represent a stuck stress response? That our brain thinks it still has to fight for survival and switches to survival mode even though the infection is actually already over? A permanent dysfunction of the autonomic nervous system and thus also of the hormonal and immune system?

This could explain the multitude of symptoms and different courses. After all, the autonomic nervous system, the hormonal and immune system influence all organ systems and are also inseparable from the psyche. In whom this has which effects varies greatly from individual to individual. Various researchers also consider Long Covid to be a malfunction of the autonomic nervous system - a so-called dysautonomia. Syndromes like POTS are dysautonomias. As I understand it - not scientifically - syndromes like ME/CFS and irritable bowel syndrome are also part of it. At the very least, dysautonomia plays a central role in them.

Energy metabolism is also impaired and there are abnormalities in the gastrointestinal tract, intestinal mucosa and intestinal flora. Certain genes are upregulated in some people as a result of the infection, and others are downregulated. This can have equally far-reaching consequences and possibly lead to the onset of diseases to which people are genetically more susceptible.

Whether Sars-CoV-2 still lingers in tissues and organs at Long Covid and steadily triggers the immune system is not entirely clear. It could also be that only virus particles remain and keep the immune system on its toes. Furthermore, viruses or other pathogens that are present and dormant in the body could be reactivated. Initial studies have already been conducted on EBV. A persistent immune reaction in the body is also possible, even though the virus has already been eliminated. Whether it is primarily a misdirected immune system that secondarily unbalances the autonomic nervous system or vice versa is beyond my knowledge.


And in ME/CFS?

Here, very similar mechanisms could be at work as in Long Covid. The intestinal flora is altered, the intestinal mucosa more permeable. The immune system could be overly active at the beginning of the disease and become exhausted as it progresses. This increases susceptibility to infection, for example. Pro- and anti-inflammatory messenger substances are partially increased or decreased in ME/CFS. Some people have autoantibodies against stress receptors (on the autonomic nervous system).

In ME/CFS, the body does not make enough energy in the form of ATP, which may explain the rapid exhaustion and crashes. The organism then goes into survival mode and shuts down metabolism. Abnormalities in the central nervous system and brain exist as well. There is probably a malfunction of the autonomic nervous system. Brain regions such as the brain stem, hypothalamus and limbic system are also in a state of imbalance. Studies provide evidence of inflammation in the brain. A faulty stress response probably also plays a central role in ME/CFS. The body is in survival mode.

ME/CFS often occurs together with other syndromes and diseases: for example, POTS (postural tachycardia syndrome), Ehlers-Danlos syndrome, small fiber neuropathy, and MCAS (mast cell activation syndrome). Scientists observe the same in Long Covid.


My personal (lay) assessment

A small German study showed that about half of the people with Long Covid were still struggling with symptoms six months after infection. They met the criteria for ME/CFS. It is not possible to say at this time whether they will develop the full-blown chronic fatigue syndrome.

Previous SARS and MERS outbreaks triggered ME/CFS in some of the people. According to the Solve ME/CFS organization, this was the case in about 11 to 40 percent of those who got sick, depending on the study.

From my point of view, there are various reasons why people don't get back on their feet after Covid-19 or take a long time to do so. For example, those who were in intensive care for a longer period of time take much longer to get better. Others have suffered damage to their lungs, heart or other organs from the infection, have mini blood clots. And then there are people who develop postviral fatigue syndrome after infection. After six months, with appropriate symptoms and after other causes have been ruled out, the disease ME/CFS is likely.


PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their ME/CFS or other syndromes.



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