The science has finally arrived showing how these conditions are not "psychological" or "all in your head." This new paradigm of disease finds that chronic illness symptoms arise when a body gets stuck in a prolonged, physiological threat response that occurs.
In this post I describe a 2016 study on the cell danger response as well as the clinically relevant and powerful science of polyvagal theory. This is also the path I travelled to heal myself and how I teach others. Each person is unique as I will discuss later so it takes a biopsychosocialspiritual approach for most people I work with to heal.
Both explain how a person with ME/CFS and other conditions has a body that is caught in very real state that is a lot like hibernation or freeze (with alternating fight flight states for many). As you'll see, the science also applies to other chronic illnesses, including autoimmune diseases of all kinds. Sixty percent of adults under 65, and 90 percent of those over 65, now live with a chronic illness, a number that has doubled since the 1980s, and continues to grow (CDC.gov, 2017).
The 2016 study is by Dr. Robert Naviaux, M.D, Ph.D, Professor of Medicine, Pediatrics and Pathology and director of the Mitochondrial and Metabolic Disease Center at UC San Diego identifying metabolic changes in ME/CFS and how it is a very real physiological state.
Download Dr Naviaux' freely available 2016 article on ME/CFS Metabolic State as a PDF.
I write this post as someone recovered from CFS/ME, lyme, fibromyalgia, chronic pain, huge environmental sensitivity and other effects of cptsd that I had for 9 years (my integration from trauma is ongoing - physically I am now well). I write it also as someone with not only the original trauma that was the catalyst for it, but also incurred additional trauma through the medical system of being told it was in my head, mocked by others who thought the same, and not getting help or support for what was actually happening in my system. There were all the doctors ready to take my money for shiny expensive treatments. But nothing helped me - creating further damaging beliefs that I could not heal and I was beyond repair.
I write this in the hope of people finding their answers sooner, being validated that that illness is real AND they can heal it, and the human to human acknowledgment that this and its associated illnesses are the challenge of a lifetime. I am passionate about people understanding their mind and body and befriending both.
In addition to fatigue, characteristic symptoms of chronic cell danger response activation include:
· worsening of fatigue and other symptoms with mental or physical activity
· Dysautonomia, POTS, trouble regulating autonomic functions like blood pressure
· difficulty recovering with rest
· symptoms not the result of excessive exertion (even if activity increases
symptoms)
· problems with memory and thinking (cognitive dysfunction often referred to as
brain fog)
· sleep disturbance
· worsening with standing or sitting (orthostatic intolerance)
· chronic or intermittent pain in joints, muscles; headaches
· interstitial cystitis
· irritable bowel syndrome
· susceptibility to infections/depressed immunity
· depression/anxiety
· fibromyalgia
· chemical and other environmental sensitivities
· subnormal body temperatures and cold extremities, intolerance of extremes of hot or cold
Although there are no tests to diagnose it directly, we can see often see some patterns in the following lab results
cerebral cytokine dysregulation
· increased cytokines with increased severity or duration of ME/CFS
· natural killer cell dysfunction
· microbiome abnormalities
· abnormalities in metabolism and metabolites (Naviaux, 2016)
· widespread inflammation in the brain (Younger)
· increased lactate in the brain (lactate occurs with anaerobic metabolism)
(Younger)
· reduced brain blood flow and brain volume, small brain lesions
· Th1/Th2 Imbalance (see more here and here)
· a subset of people with ME/CFS have slightly low cortisol levels
· autoimmune activity (at 17:25) in cerebrospinal fluid against adrenergic receptors
(often associated with epinephrine and norepinephrine in sympathetic nervous system activation) and acetylcholine receptors (often linked to parasympathetic activity)
The Science Of Neurobiological Stress
The science of traumatic stress, neurobiology, epigenetics and more demonstrate that subtle and overt types of adversity alter physiology, cellular function, metabolism, immune and nervous system function and other organic and biological activities. Adverse life experiences increase risk for autoimmune and other chronic physical diseases, among many other effects.
Psychological symptoms of how the personality develops, coping skills, behavioural and belief patterns add to the cycle of keeping the cell danger response switched on - so a bottom up (nervous system approach) along with a top down (self-compassion, parts work, pattern spotting/shifting, spiritual practice) are indicated together in order to bring back harmony to the system. I am not in the camp of solely somatic/nervous system work. I believe in a dual approach to integrate mind and body, and this has been very successful in my practice.
It was ground-breaking for me when Dr Naviaux’s research was released in 2016. They identified 20 metabolic pathways in people with ME/CFS that were markedly different from healthy controls. His original slide show is here if you’d like to see it. Naviaux explained how these biological pathways were those of the cellular defence response (CDR). This is the survival response of a healthy organism to threats such as infection, lack of food or oxygen, or cold and other dangers (Naviaux, 2016).
"The cell danger response (CDR) is the evolutionarily conserved metabolic response that protects cells and hosts from harm. It is triggered by encounters with chemical, physical, or biological threats that exceed the cellular capacity for homeostasis (Naviaux, 2014).
80% of the abnormal metabolites Naviaux found in ME/CFS were part of the CDR pathway. The study found that triggering events for ME/CFS fell broadly into five groups (p. e5473):
1. biological (viral, bacterial, fungal/mold, and parasitic infections)
2. chemical exposures
3. physical trauma
4. psychological trauma
5. unknown
The specific biological and chemical exposures and the precise nature of the physical and psychological traumas were diverse, numbering more than a dozen in just this small sample. Several patients had multiple triggers that converged in the same year.
Naviaux explains that ME/CFS is not directly caused by these triggers, not even by toxins or infections as common as Epstein-Barr virus or Lyme. Rather, when a body is exposed to these triggers and goes on to develop ME/CFS, it's is due to an activation of the cell danger response. This is very important to note as some wellness ‘experts’ have created so much fear about infections and virus’s where really we need to look at the host organism as a whole.
These different environmental stressors, in other words, trigger a similar hibernation / freeze cell danger response in people who go on to develop ME/CFS and many other expressions of Neuro immune conditions, also known as PPD (psychophysiological disorders). Only a small percent of people who are acutely infected with Epstein-Barr virus (EBV) or human herpes virus 6 (HHV6), or Lyme disease go on to develop chronic symptoms. If the CDR remains chronically active, many kinds of chronic diseases can occur.
In the case of CFS, when the CDR gets stuck, or is unable to overcome a danger, a second step kicks in [after the body has worked to fight off the infection and you have maybe been sick for days, weeks or months] that involves a kind of siege metabolism that further diverts resources away from mitochondria and sequesters or jettisons key metabolites and cofactors to make them unavailable to an invading pathogen, or acts to sequester toxins in specialized cells and tissues to limit systemic exposure. This has the effect of further consolidating the hypometabolic state
So for anyone who developed ME/CFS after an infection or exposure to a toxin such as mold, their body may have been directly affected by the exposure, but the illness arose because of the CDR and all this entails, including potential difficulty getting rid of the infection or toxin. He explains the metabolites they found:
The chemical signature that we discovered is evidence that CFS is an objective metabolic disorder that affects mitochondrial energy metabolism, immune function, GI function, the microbiome, the autonomic nervous system, neuroendocrine, and other brain functions. These 7 systems are all connected in a network that is in constant communication. While it is true that you cannot change one of these 7 systems without producing compensatory changes in the others, it is the language of chemistry and metabolism that interconnects them all
Where this gets interesting is that these metabolites are controlled by the brain and nervous system. The brain is the master switch for metabolism. Any factor that causes a chronic change in how the brain works will produce objective chemical changes in the blood. Reciprocally, any chronic change in any of the 7 systems listed above will produce compensatory chemical changes in the blood that are coordinated by the brain, but can also change brain function. Profound personal loss, grief, depression, fear, chronic pain, anxiety, and PTSD all cause chemical changes in the blood that we can measure with metabolomics.
The New Science Of The Nervous System
Here's what is being learned about how human bodies orient and respond to threat and how this can set individuals up for disease states. It starts with the autonomic nervous system and how its main goal is to maximize survival, even when the cost is high for us in our daily lives.
While individual cells and tissues can mount their own defensive responses to infection, physical wounds (such as surgery or physical trauma), toxins and other threats, the nervous system gets involved when the cell defence response becomes stuck and affects the whole body, such as in ME/CFS, chronic lyme, chronic pain, etc.
Our autonomic nervous system (ANS) manages and regulates physiological functions such as blood pressure, heart rate, temperature, immune activity, digestion, mitochondrial function, energy levels, metabolism and more. It supports these functions by directing cellular, metabolic and other underlying processes in our physiology in certain times, such as in those that involve many organ systems and chronic illness. It does this outside of our conscious control or awareness.
One of the branches of the autonomic nervous system (ANS) can cause hibernation-like states in humans (the dorsal vagal branch of the parasympathetic nervous system). It originates in the brainstem, which is where the CDR is regulated.
It is one of three branches of autonomic nervous system, all of which interact with one another to influence short and long-term health. Here's an overview of the three branches, starting with fight and flight of the sympathetic nervous system, which is linked to Naviaux' CDR.
Our Survival Mechanisms
1. Sympathetic
We are most familiar with the sympathetic branch of the autonomic nervous system, which is the branch that can feel like having a foot on the gas pedal. The sympathetic nervous system enables us to take action in everyday life; to mobilise, and also in the event of threat.
This survival response is fuelled by adrenaline and cortisol. Here you are a system in motion, or more accurately a system in commotion. Flooded with mobilizing energy, you no longer look for connection; you are now focused simply on survival. The body moves into action while the ability for complex, flexible reasoning is impacted (Maran et al., 2017).
Stories that emerge here are about unsafety. If I am in this state - I have moved you from friend to foe. The world from safe to unsafe. I may not want to but my biology takes me there. If there are signs of safety there - but I will miss them as my nervous system no longer looks for cues of safety
Its sole focus is on survival
It is like a tsunami wave that will mobilise and move through in any way it needs. This is also the state we are primed and triggered into when we watch the news, when we take in TV ‘programming’ that activates this state of being, when we tap into collective cues of unsafety. In the first minutes and hours of a fight flight responses to stress, our bodies release adrenaline, increase blood pressure and heart rate, augment body temperature and breathing, enhance blood sugar availability to fuel muscles for fighting and fleeing, and increase our immune response (Dhabhar, 2018). This is all aimed at maximizing energy levels to support fight and flight. This is all part of the healthy cell danger response.
In this acute sympathetic nervous system response, our bodies also decrease or suppress functions that aren't important for immediate survival, such as digestion and rest. If stress continues for a long time, an increased degree of fight flight arises in which cortisol is released, the immune system is suppressed, inflammation rises and symptoms can occur. In health, our bodies return to baseline when the stressor goes away or the threat disappears. In health, at rest, and in play and safety, the sympathetic nervous system coordinates with the other branches of the autonomic nervous system to constantly tweak and maintain just the right levels of blood pressure, heart rate, oxygen consumption, mitochondrial function and other basics that support our ever changing activities of daily life. In some circumstances, which I'll discuss later, the sympathetic nervous system remains turned "on" and this acute CDR contributes to disease (Naviaux, 2014).
Parasympathetic Nervous System – Polyvagal Theory
Stephen Porges’ polyvagal theory shows that the parasympathetic portion of the autonomic nervous system is comprised of two branches rather than one. This more evolved branch of the parasympathetic nervous system is present in mammals and humans and is called the social nervous system or the ventral vagus complex (VVC).
The social nervous system is regulated by the parasympathetic nervous system branch called the ventral vagus complex. It is the faster of the two branches and supports safety and survival in the most metabolically energy efficient capacities we have: those of connection and communication.
If you've heard of the ventral vagus, it's because it is "The Vagus" we refer to when we:
· incorporate mind body practices such as yoga nidra, mindfulness, or meditation to protect or improve our health
· use vagal stimulation as a treatment tool
· take up a hobby or other activity for pleasure
· go on a vacation to slow down and catch our breath
In health, our social nervous systems are in charge of autonomic nervous system functions and can inhibit fight, flight as well as freeze.
A healthy ventral vagus allows us to connect to ourselves and the world, and to empathize and bond with others, which supports safety through numbers and strength. It also enables people to read others' facial expressions to assess whether they are safe to approach or should be avoided. This is all part of a highly evolved and built-in survival mechanism.
The ventral vagus allows us to sense into our gut feelings that warn us of safety vs danger, and to communicate using energy-sparing actions through our voices, gestures and facial muscles that show and express our feelings and boundaries. The ventral vagus makes survival and defense actions possible by placing a gentle brake on our baseline heart rates, which helps us feel more connected and relaxed. This occurs at the cellular and physiological levels and can often be enhanced through mind body practices.
In health, the ventral vagus can release its gentle brake so our heart rates can rise a little for activities such as standing, walking and playing. This enables us to shift gears without resorting to the higher energy functions of SNS fight and flight systems with releases of adrenaline or cortisol. The ventral vagus is a critical player in keeping us healthy through energy efficient means. The body will reorganize when it feels safe (Porges 2018) Activity of the ventral vagus, often referred to as vagal tone, can be measured through heart rate variability. The ventral vagal pathway from the heart connected with pathways that control muscles of the face and head, regulating how you see, hear, speak, express emotions with your face, and turn and tilt your head, forming a “face heart” connection (Porges, 2003). This is one of the reasons why I teach HeartMath!
When ventral vagus functions get interrupted, however, we can end up in states of prolonged fight and flight, hibernation and freeze, or some combination of both.This is what happens when we have an illness like ME/CFS, chronic lyme, chronic pain and feel as though we have one foot on the gas and one foot on the brake. It means that we each have our own, unique, individual version of the same disease. I’ll discuss this a little more after the next section on the freeze response
Dorsal Vagal – Freeze And Shut Down
This is the oldest mechanism our nervous system has, and where we go if mobilisation doesn’t help us manage the moment - we go to the parasympathetic dorsal. The dorsal vagus, like the ventral vagus, originates in the brainstem (Porges, Chitty). States of freeze and hibernation are facilitated by the second branch of the parasympathetic nervous system, the dorsal vagal complex (DVC).
This is autonomic conservation. Protection that happens is some flavour of disappearing. Breath is short and shallow. There is not enough energy in the system. Digestion doesn’t work. Blood flow to the brain and the oxygenation of the brain changes. We are disconnected from self-others the world and spirit . The doorway to dissociation happens here too. We can have parts of us that move us into this state. It permits survival and persistence under conditions of environmental stress but at the cost of severe y curtailed function and quality of life (2016, p. e5477).
When we are in healthy autonomic balance, the dorsal vagal complex does a very different job for us. In health when it senses safety, the dorsal vagus interacts with the other branches of the autonomic nervous system and uses its braking function to gently decrease blood pressure, heart rate, and oxygen use. It supports digestion so that we are operating at maximum efficiency, just like an air conditioner that turns on and off to maintain a comfortable temperature rather than perpetually staying on and making it too cold. In health, the dorsal vagus coordinates its functions with the social nervous system branch and the sympathetic nervous system to support changes in activity levels that takes us from activity to rest, eating to digesting, and back. It functions to help us feel calm and available for play and work and rest.
The Intelligence Of The Survival Dorsal Vagal Response In Nature (Nature includes us)
In freeze, our own blood pressure, heart rate, temperature and oxygen levels can also go down. We may feel slow or foggy headed; we may disconnect and watch the event unfold as if we're standing outside of our bodies or watching from the ceilng; or we may feel numb, limp or unable to move. We may also feel exhausted or too weak to stand.
Freeze states can also flood a body with feel-good hormones and numbness or even euphoria. This is nature's way of supporting humans (and other animals) so that the pain of a broken bone or a physical assault do not prevent trying to escape and engaging fight and flight if an opportunity arises. In freeze / hibernation, our bodies divert energy from eating and digesting to hunkering down and conserving as many resources as possible. Just like c. elegans.
Naviaux explains that dauer / freeze / hibernation physiology occurs as an intelligent strategy, not as a random mistake, mutation or a problem with faulty hardware or software:
· Entry into freeze confers a survival advantage in harsh conditions.
· Entering a hypometabolic state during times of environmental threat is adaptive,
even though it comes at the cost of decreasing the optimal functional capacity.
· When the freeze response is blocked by certain mutations, animals are short-lived when exposed to environmental stress (p e5477).
In other words, when the freeze response is not an option, we don't live as long. This is the definition of Dauer, which means "persistence or long-lived in German"
The metabolites Naviaux identified in ME/CFS patients reflect a fundamental reset in our physiology (to use Cort's term) that is consistent with freeze. This pathway, opposite to the acute CDR, includes the following, which are VERY important as often people are diagnosed with multiple different illnesses all encompassed by the below list:
· energy conservation and death-like states whose primary goal is survival despite the cost
· organism geared towards survival via inaction rather than action, to wait out overwhelming threat
· altered Th1/Th2 imbalance
· decreased immune system ability to fight infection
· loss of antibacterial and antifungal activity
· a "decrease in the ability to restore high-energy phosphate stores after exertion"
(this relates to mitochondrial ATP and energy production)
· normal or low blood pressure
· aversion to glucose as a fuel with preference for fat as a fuel (Naviaux, 2016;
Lant, 2010) [this suggests why people with ME/CFS may do better with ketogenic
diets that use fat as the primary fuel]
· loss of intestinal mucosal integrity and leaky gut
· decreased gut absorption as part of a hypometabolic survival response
· changes in DNA methylation and histone modification that alter gene expression
(epigenetic changes, Naviaux, 2014. p. 10)
· stress-induced cholesterol pathways, which are different from routes used in
health
· altered mitochondrial function and the finding that:
Mitochondria represent the front lines in cellular defense and innate immunity ... Their rapid metabolism makes [them] "canaries in the coal mine" for the cell. Low cortisol is another shift that happens as part of nervous system response to threat. Low cortisol is common in late phases of PTSD and in adults with a history of adversity in childhood as well as in their parents' lives.
Cortisol is measured as part of a physiological / biological response. Like other physiological effects of environmental stressors including psychological trauma and adversity, it is not a psychological effect but a biological effect. Low cortisol is seen in many chronic diseases such as fibromyalgia, cardiovascular and gastrointestinal diseases, rheumatoid arthritis, psoriasis, and thyroid disease (Lehrner, 2016, p. 268).
Low levels of cortisol are not a problem of adrenal exhaustion but the result of a body responding to prolonged threat in a directed rather than accidental way. The high cost of being in a prolonged state of freeze, hibernation or dauer expresses itself as symptoms. Other conditions can be from more of a long term sympathetic stuck cycle.
As a result, ME/CFS, like type 1 diabetes, POTS, fibromyalgia, celiac disease, MS, lupus, asthma, Parkinson’s, autism, Alzheimer’s and a 100 other diseases that Naviaux refers to, reflects a nervous system pattern that is deliberately inciting one or more different types of cell danger responses and all the changes this entails.
These conditions therefore are not caused by adrenal exhaustion even as adrenal function can be low (low adrenal function supports states of freeze while high function is supportive of fight/flight; both or alternating functions can be seen in ME/CFS and other environmental illnesses, not due to a thyroid that is out of whack even as our thyroid activity may be low not primarily from a lack of Vitamin D, nutrients or building blocks that enable mitochondria to function well even as these states can cause symptoms (we may have low building blocks because of poor absorption but many, such as Vitamin D, are intentionally low because the body is more or less sensitive to them in states of freeze, is conserving energy by not producing chemicals that are not absolutely necessary for survival, or is actively removing molecules and chemicals in order to create and preserve a freeze state that needs these factors to be low or absent for optimum function and self-protection) [Naviaux, 2014] not directly the result of leaky gut (cell walls in the body and gut are intentionally less boundaried during states of dauer / freeze / hibernation) and so on
Variations In Each Person - Mapping States
Some people have symptoms that are predominantly purely dorsal vagal or dorsal vagal combined with fight flight, some oscillate between various combinations of fight flight, and freeze / faint / fold. This has been found in PTSD research, where a person can be in a state of fight flight (hypervigilance, high blood pressure, states of high blood clotting factors, or rage) in one moment, and in exhaustion, collapse, immobilization, low blood pressure, cold body temperature or depression, in the next. I've felt it in myself and seen it happen with clients when I was still learning how to catch early warning signs or anticipate this reaction that could happen very suddenly.
But the science is showing that such variations in symptoms are an effect of environmental stress and resulting perceptions of threat in the nervous system that are not psychological. Another impulse seen in the environmentally ill community is a profound impulse to escape. This has components of the flight response but also has a strong component of the health that lives within the dorsal vagal freeze response that craves quiet, stillness and avoidance of social contact, which can support the process of healing. Sometimes we need a break from our ‘normal’ life (which is rarely healthy for us) in order to allow the organism to heal.
This is why with each person I work with we do personal maps to show which areas someone is stuck in, what perpetuates that cycle for them, and help them learn how to befriend each state to gently regulate their nervous system back up to ventral vagus and start to grow more of a vagal brake to help them navigate different states (we need them all!) without getting stuck. This takes time, daily practice, commitment and kindness - but it works
Why We Get Stuck
Our defences are adaptive and occur at multiple levels, including the cellular level and through physiology such as heart rate, energy levels and gut function. These mechanisms are meant to ensure our survival.
But while humans, like other animals, are designed to recover from infections, exposures to toxins and life’s other adversities given enough time and support, experiences severe enough to trigger a freeze response put people at risk of getting stuck and resetting into prolonged physiological states of survival. The result is a body caught in CDR pathways with symptoms that express themselves as chronic diseases. When the CDR persists abnormally, whole body metabolism and the gut microbiome are disturbed, the collective performance of multiple organ systems is impaired, behavior is changed, and chronic disease results
The field of trauma research in humans and animals has found that bodies and physiologies can get stuck in states of defense when the nervous system does not realize the threat is gone and the danger is past. In the wild, animals that have just escaped their predators discharge their states of fight, flight and freeze, often by shaking or trembling. We experience this as humans too.
When this natural process of releasing a defence response is interrupted, delayed or prevented from happening - as frequently occurs in our human lives, such as when we fill out a police report after an accident, when childhood abuse or emotional neglect persists through many years, or when we undergo surgery and wake up to bright lights and bustling, efficient personnel that don't quite connect with us - our brains may not get the message that we've survived the threat. In such events our bodies can default to freeze states as an adaptation response.
What we've learned from research in traumatic stress is that, when our brains don't recognize that the threat is gone or the danger has passed, they maintain their states of defence to maximize self-protection and survival. This is what stimulates our brains to reset from healthy social nervous system functions to temporarily lose the ability to suppress and regulate fight, flight and freeze. A symptom of this often includes a loss of our sense of connection to ourselves, to others or to our sense of belonging in the world. In other words, when our nervous systems shift into defence responses, our brains often disconnect and we feel alone.
These changes in physiology reflect a persistence of the CDR pathways. They don't usually happen out of the blue but instead occur following a gradual accumulation of exposures throughout our lifetimes. The reset happens after one final "last straw," which is the exposure that resets our nervous systems. The CDR shows up in slightly different ways for each of us based on our accumulation of life exposures and adversities.
It may look like ongoing states of of fight and flight for some of us (metabolic syndrome, type 1 diabetes and others per Naviaux, 2014), as prolonged states of freeze for others (ME/CFS, depression, and other chronic illnesses), or as some combination of the two in which we either alternate between too much gas and too strong of a brake, or feel both at the same time even as the brake covers over symptoms of ready-for-fight-flight-in-the event-of-an-opportunity
In humans, the common factor that triggers the persistence of a survival state of fight, flight or freeze is initiated by experiences that elicit a degree of helplessness. This is the inherent definition of trauma that differentiates it from stress.
Any negative life event occurring in a state of relative helplessness—a car accident, the sudden death of a loved one, a frightening medical procedure, a significant experience of rejection—can produce the same neurophysiological changes in the brain as do combat, rape, or abuse. What makes a negative life event traumatizing isn't the life-threatening nature of the event, but rather the degree of helplessness it engenders and one's history of prior trauma.
The experience of an infection or exposure to a toxin can trigger a similar biological overwhelm and autonomic nervous system perception that fight flight and ventral vagus are insufficient methods for addressing the threat. The science of traumatic stress explains how survival states of nervous system function can persist even after a toxin, infection or other environmental stressor is gone. And even when the threat seems small.
In my online groups we look at early life and how they impact our neurobiological development to prime us for these conditions. I want to reiterate that myself and many hundreds of thousands of people have recovered from these conditions by getting empowered to learn about their own system, and then learning the skills and cultivating the resilience to begin to change our wiring through the power of neuroplasticity (and courage!). I do not actually believe this is all about ‘re wiring pathways’. I think this is much a much deeper return to relationship with ourselves and with nature. We all have an innate intelligence in us that knows how to return to homeostasis. There are many ways to access this and help our system move towards it.
Our history is NOT our destiny and we are much greater than the sum of our challenges.
