Understanding the connections between trauma and ME/CFS (myalgic encephalitis/chronic fatigue syndrome) has helped me begin to heal and change the direction of my life in the best possible ways.
I never realized that I’d experienced adversity until I left medical practice, retrained as a trauma therapist and discovered how adverse life experiences affect health.
Effects of adversity on risk for chronic illness happens through the impact of adversity on gene function through epigenetics, as well as effects on the nervous system and the cell danger response (among others).
This is my story of how I got sick and how I learned to understand, work with and begin to recover. I call this my “Chrillog” for chronic illness weblog and you will find other’s stories here.
My Chrillog and others will help you begin to make sense of your chronic illness or other health problems and discover new tools to support your pathway of healing.
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The effects of adversity are not psychological. ME/CFS is not the same as PTSD, and is not in our heads as is still commonly thought.
For most of us with ME/CFS and other chronic diseases, adverse events that influenced our health have been remarkably subtle.
For most of us, traumatic events that affected risk look like just normal “everyday life” kind of experiences. I’ll give you examples below.
You can learn about the science supporting the role of adverse experiences in shaping physiology and risk for disease and more in my post on how ME/CFS reflects a state of freeze / hibernation (or in the free download later in this post).
NOTE: Understanding links between trauma and ME/CFS has made sense of my personal experience and of risk for many other chronic diseases, including type 1 diabetes, asthma, MS, and rheumatoid arthritis, among others.
What I’ve learned from the growing body of research may help you make sense of your own set of experiences, regardless of which illness you may have.
Trauma and ME/CFS: My Story
My Onset of Chronic Fatigue
I started having bouts of fatigue in the late 1990s when I was in my early 30s. They lasted a few days at a time and left me so tired I didn’t want to roll over in bed at night. I was skiing, bicycling and working 60-80 hours a week as a family doctor and called these episodes “fatigue attacks” because they came out of nowhere and disappeared just as quickly. I could push through and recover by spending time in bed on weekends and when I felt healthy again in between episodes, it seemed as though all was normal.
Around that time I received a letter from an aunt who had finally received a diagnosis for her own disturbing symptoms, which included fatigue. The name of her disease was “CFIDS” for Chronic Fatigue Immune Dysfunction and the photocopies she sent sounded intense, scary and complex. I still seemed really healthy apart from these occasional, weird “attacks” and I had no idea I was in the early phases of developing the same chronic illness, which is now called ME/CFS for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome. Her twin sister was later diagnosed with ME/CFS as well. The cause and treatment remain unknown.
As my symptoms gradually worsened and the fatigue attacks became more frequent, I felt bewildered. I’d been physically as healthy as a horse my whole life other than asthma, which was mild. I didn’t have any obvious causes for fatigue such as low thyroid, high blood sugar levels or diabetes, or anemia. Even the depression I’d had most of life had lifted. I had not recently been sick with a significant infection. I never had symptoms of a tick borne disease.
In 1995 I had finally attained my goal of becoming a faculty member and teaching family medicine. Around the onset of my fatigue a few years later, however, I was feeling conflicted about my work hours, the short time I had with patients, and how little I could offer anyone with chronic or debilitating diseases because there simply were (are) no cures.
I figured my fatigue was stress related.
So I ate in a healthy way, saw a rolfer and did psychotherapy, slowed down and worked part time for a year, took a second year to stop working and relax more fully, and then changed careers altogether. My fatigue progressed despite these changes. It increased from intermittent periods of exhaustion between periods of normal health where I could still bike, ski, windsurf, hike and work – to a steady state of perpetual exhaustion that felt “death-like.” I eventually got to the point where I had to lay on my bed for a while after taking a shower and schedule rest periods between work hours because I was completely spent all of the time.
In 2009 I had difficulty working even 10 to 15 hours a week and applied for disability. It was stressful and scary to watch my health deteriorate despite everything I was doing. Within a week of stopping work, the years of pushing through caught up with me and I became almost completely bed-ridden for 9 months. I had trouble sitting up, standing, or walking for more than a few minutes at a time (probably POTS aka postural orthostatic tachycardia syndrome). Talking, especially on the phone, was exhausting, as was taking a shower or drying my hair. I paid someone to deliver my groceries and cook for me.
The course of my disease has reversed since 2009. As of January 2021 I have a pretty normal looking life even as I’m not yet back to full health. I met David in 2007 and we married in 2011 – even though I was still very sick – and his presence in my life has been a life changing resource. I don’t yet have the ability to return to work as a trauma therapist facilitating the regulation of challenging emotions and physiological processes and am still working on that for myself.
I do, however, take 30 to 45 minute brisk walks twice a day, have been able to travel to visit family and even attend workshops for working with my trauma and ME/CFS in Europe in 2019. I am able to run errands and can take care of myself including getting groceries and cooking. I still have occasional flares but now that I have a context for understanding trauma and ME/CFS it helps make sense of my symptoms and exacerbations, as well as giving me good tools to prevent or shorten them. I developed severe food intolerances for years that have almost fully resolved since 2018. My symptoms of irritable bowel syndrome (IBS) are greatly improved but not yet normalized.
While alternative health approaches were supportive for many years (acupuncture, homeopathy, making significant dietary changes, energy medicine, intuitive healers and more) nothing has been as helpful or made as big a difference as understanding and working with the connections between trauma and ME/CFS. It’s an awareness I never had as an MD.
After 20 years of doing all kinds of trauma therapies I use my tools on a daily basis as I continue to work on healing and only do sessions on occasion now if I need them.
The Aha Moment and a Change of Perspective
After taking a year off from medicine in 1998, I followed my sense that the body is wise and that symptoms may represent an intelligent process that has something to convey. I retrained as a somatic psychotherapist at Naropa University and learned how to listen to the body’s language, to help people regulate their nervous systems and to follow symptoms like a trail of bread crumbs that guide the process of healing.
The aha moment that lead me to a different way of thinking about chronic illness came from one of my first classes. We were learning how emotional symptoms that are overwhelming in some way can interfere with our natural capacities to heal. It started with an example from the director of my program, Christine Caldwell Ph.D. (1)Caldwell, C. (1996). Getting Our Bodies Back: Recovery, healing, and transformation through body-centered psychotherapy, Shambhala. She had asked a client who had a habit of wiping her hands across her face during therapy, if she could slow the movement down and be curious. Together, they had gently watched for any feelings, images or sensations that might arose when she did so and it had lead to an unexpected realization and shift.
In paying attention to the movement she had not been aware she even used, the client had remembered a moment from childhood. She had been at her mother’s funeral when her father had sharply ordered her to “wipe those tears off your face.”
She had come to therapy decades later. Her natural process of grieving, which is a way our minds and bodies recover from overwhelming events such as the loss of a parent, had been interrupted and shut down. And shutting off her grief had lead to unrecognized emotional pain with no remembered cause.
The woman cried and felt her grief over her next two therapy sessions and went from smoking 2 packs a day to 1/2 a pack.
I learned that habits such as smoking, problems with alcohol or drugs, overwork, overeating and other addictive behaviors are unconscious attempts to regulate overwhelm from past adversity.
When I wrote the paper for my class (2)Mead, V. (1999). Body Centered Theories of Addiction. Naropa University, Paper written in Somatic Psychology Masters Level Program, for class on “Theories of Somatic Psychology” (Christine Caldwell). Boulder, Colorado, I mused about whether similar experiences could interrupt physiological pathways to affect risk for chronic illness.
Blood pressure, heart rate and blood sugar levels, for example, increase naturally with activity and return to baseline during rest and recovery. They also increase in states of fight and flight and tend to decrease dramatically in states of hibernation-like freeze.
Could such cycles become more permanent, I wondered? Could they remain unaddressed or unresolved similar to the way grief had been interrupted in my teacher’s client? And if so, what other kinds of events might shut down or alter our physiologies?
That’s when I started to learn about trauma.
As a doctor, understanding trauma meant treating physical wounds and broken bones that resulted from car accidents, violence, falls and other events, which medicine and surgery can so often fix. I thought of trauma as something that happened to war veterans, which was relevant to the field of mental health but not something I had been given tools to work with in medicine.
I had never considered that trauma might have other effects.
Researching the Role of Trauma in Chronic Illness
I became intensely curious about trauma as I started my explorations. I wondered whether the research literature would show trauma to be a risk factor for any chronic diseases.
Were adverse life experiences more common in people who developed a chronic illness? Were there particular types of trauma that affected risk? How did one know if trauma had played a role? Were there triggers as there are in PTSD?
I started my research with type 1 diabetes. Using my skills from medical school to search the literature, I found studies that changed my path, my life, and eventually my health.
What I discovered was that scientists and physicians around the world were independently exploring pieces of the puzzle for their particular disease of interest and in their specific field of study. They were working in silos. There were studies published by small research groups here and university teams there; individuals asking one question in the department of epidemiology in one country, and other teams asking questions from the perspectives of child development or neurophysiology in another. I discovered investigators realizing that prenatal stress increased risk for type 1 diabetes. Others finding similar risk factors for asthma who stumbled on a cure by treating moms for the traumas and stresses experienced in pregnancy. Epigenetic biologists realizing that mothering behaviors affect genes during very specific and short windows of time in early life, and that this affects how our bodies respond to stress throughout our lives and for multiple generations.
I was dumfounded.
Sometimes the results showed no increased risk from trauma. I came to see that this was sometimes because they were asking the wrong questions. And mostly the studies did find links. No one was putting it all together at the time.
Understanding trauma and learning how to heal its effects gave me a huge context from which to begin to synthesize and make sense of these differing results.
I started to see patterns. And I was captivated by the wealth of information available.
What I learned about trauma started shedding a new light on everything I had ever learned about chronic illness.
I didn’t recognize that I’d experienced trauma myself at first, but after I started to understand the nuances, it began to make sense of my own journey with chronic illness too.
This blog is where I write about what I’ve learned about the role of adverse life events, which is a term that better encompasses the kinds of experiences that affect risk for almost every chronic disease I have looked into. In 2014 I created a video introduction to this blog that briefly summarizes what I learned from the research (as you’ll see, my health has improved a great deal in the years since then). I added 2 more short videos in 2017. The first describes two types of trauma we commonly recognize when we have a sense that trauma has played a role in our chronic illness. The second video introduces research on two other risk factors for chronic illness when we have no sense of any history of trauma. You can find more videos, podcasts etc on my media page.
7 New Ways of Understanding Trauma
I’ve come to a whole new way of understanding trauma and ME/CFS as well as the role of adverse life events in other chronic illnesses in the past 15 years. Here are 7.
1. Trauma is More Common Than We Realize. At least 70% of adults and 50% of children (and more) experience at least one traumatic event. When you know that half of all adults in the U.S. have at least one chronic illness and that 1 in 5 have a mental health condition in any given year it becomes less radical to consider a relationship between trauma and chronic health conditions.
2. The Nature of Trauma Includes Ordinary and Extraordinary Events. There are big traumas – which neurologist Robert Scaer refers to as “extraordinary” events – such as abuse, war, surviving hurricanes and other natural disasters; And there are little traumas, or what Scaer refers to as the seemingly mundane, “ordinary” events of everyday life, such as being bullied, moving frequently in childhood, having an accident or undergoing surgery, being fired or harassed or flunking an exam. The loss of a parent and other overwhelming experiences, especially in childhood when we are more vulnerable, can also be traumatic. Trauma is much more commonplace in our own lives than we realize.
3. The Effects of Trauma Go Beyond Mental Health Conditions. The effects of trauma are not limited to PTSD (posttraumatic stress disorder), depression, and anxiety. They also include addictive behaviors, which are unconscious attempts to avoid or alleviate pain or suffering. Trauma affects our capacity to form supportive, nurturing relationships as adults. And trauma also increases risk for chronic physical diseases.
4. It’s Not Psychosomatic, It’s Epigenetic. The perspective that emotional health conditions are caused by emotional experiences while physical health conditions are caused by physical problems comes from a false perception of mind and body (3)Baldwin, D. V. (2013). “Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders.” Neurosci Biobehav Rev 37(8): 1549-1566. Trauma affects our genes and alters the function of the nervous, and immune and other organ systems. Healing trauma can reverse epigenetic changes. When a person with a history of trauma has a chronic illness it’s not psychosomatic or because of “laziness” or a personality problem. It’s because adverse life events affect our genes.
5. Trauma Arises From Experiences of “Freeze.” Trauma is an experience that interrupts our sense of flow and life energy, our sense of safety, or that shakes our sense of trust in ourselves, in our relationships or in the world we live in. Although fight and flight are hallmarks of both stress and trauma, trauma occurs from experiences in which we feel helpless, overwhelmed or have no control. Such experiences lead to the less recognized survival state of freeze.The freeze state is a brain mechanism’s last resort when fight and flight are not options. Freeze states can feel like we’ve shut down, disconnected, or watched an event as though from far away or in slow motion. These states can leave us feeling numb or hopeless, depressed or “death-like,” among other feelings and sensations. The state of freeze is what interrupts emotional and physiological cycles that are designed to help us to heal.
6. Trauma Symptoms Have an Underlying Intelligence. The freeze response, also sometimes referred to as similar to a state of hibernation or shut down, is an intelligent, protective survival mechanism designed to keep the organism alive when no other options exist. Our bodies default to this mechanism as a last resort even when it means turning off a small part of ourselves, such as repressing the emotion of grief in my teacher’s client. Research shows that it also affects physiological processes, such as blood pressure, heart rate, cortisol and blood sugar levels. I now see the links between trauma and ME/CFS and I that the mechanisms are similar for mental and physical conditions affected by adversity. The research and my personal explorations have lead me to the perspective that symptoms are the result of this intelligent process gone awry. It’s about a tradeoff our brains make in difficult circumstances – risking a symptom is a small price to pay in exchange for survival.
7. The Kind of Chronic Condition May Be Influenced by Timing of Exposure. Studies in embryology, brain development and early relationships show that organ systems are most sensitive to their environments when they develop, especially during early formation in the womb. These are known as sensitive periods or critical periods. If a woman experiences stress during her pregnancy, the timing (such as early or late; in the first, second or third trimester, for example) has an influence on whether her baby is at increased risk of being born smaller than usual. This is a risk factor for many chronic health conditions and reflects exposures to prenatal stress. Exposure during the World Trade Center attacks showed that timing also affected pregnant women and their baby’s responses to stress after birth. And timing of exposure influences risk for developing one kind of chronic illness rather than another as has been found in the Developmental Origins of Adult Health and Disease research. I had had no idea that the kind of chronic health conditions I developed could be affected not only by my genes but also by what – and when – my mother had experienced during her pregnancy with me.
Recognizing 8 Types of Trauma
When I first learned about trauma I didn’t think I’d experienced any myself.
This is a response I regularly hear from others with all kinds of chronic illnesses as well.
But what I learned through the literature, my training, with clients and especially through deep personal exploration and body based therapies was that I have indeed experienced adverse events. It’s often much more subtle than we realize – until you learn what to look for.
I have found that 5 types of trauma show up time and again in studies of increased risk for different kinds of chronic illness as well as mental health conditions. Here’s an overview of what I learned.
1. My Adverse Multigenerational Experiences (AMEs)
Through conversations with family, geneology research, and from personal explorations such as from Hellinger Family Constellations work and through such books as “The Ancestor Syndrome,” and “Even if it Costs Me My Life.” I’ve learned about and begun to heal the effects of trauma in my ancestors’ lives.
Two of my grandparents lost their mothers in childhood. One from an accidental overdose by the family doctor. The other from suicide. My great grandmother committed suicide when her son, my grandfather, was 6 years old and her daughter wasn’t yet 2 years of age.
I’d known of the first, the second took me by surprise.
Both of my maternal grandmother’s parents were bedridden when she was a child. I was essentially bedridden for almost a year during my illness. Perhaps these are linked.
One of my grandmothers hemorrhaged and nearly died after an emergency cesarean giving birth to my father, whose life was also therefore at risk.
My mother’s mother had such severe nausea throughout her pregnancy that she was hospitalized. This happened in the 1930s when hospitalizations were rare. She’d had 2 miscarriages before her pregnancy with my mom. Miscarriages have a much more profound affect on women and parents that we generally recognize.
There have also been deaths of siblings and estranged fathers in my family history. Your own history likely has all kinds of difficult life events that may have affected your health too.
While some of these events, like suicide, are very significant, it seemed to me when I first learned about them that such things happen to everyone. I’d never thought about them much in relation to my symptoms. This is a common viewpoint in our society and in a culture where medicine sees the mind and body as separate as either dismisses the role of emotions and trauma, or considers trauma to imply an illness is in someone’s head and therefore “not real.”
But such events can have an impact on the health of multiple generations. I’ve felt it in the sensations, emotions and shifts that have arisen in my body through my process of healing.
2. My Adverse Babyhood Experiences (ABEs)
I always thought my mother’s pregnancy with me had been entirely normal but gradually came to recognize that she had experienced significant stressors. My parents moved to another country when my mother was pregnant with me, leaving her entire support system behind other than my dad, who was working full time. She did not yet speak the language. After my birth, my mom developed a spinal headache from her epidural and could not lift her head off the pillow.
Breastfeeding “didn’t work.” This can be an indication of a bonding disruption.
Before I turned two she had my sibling and then her father died. She told me a few years ago that she’s never cried as much as during those two years.
Difficult experiences in mothers’ lives make it harder for them to bond. This can affect long-term health in a child (learn more in my detailed post about adverse babyhood experiences or “ABEs“).
Prenatal stress, early separation, and a mother’s loss of a loved one during this earliest period of development are risk factors for asthma and other chronic diseases.
3. My Adverse Childhood Experiences (ACEs)
The Adverse Childhood Experiences (ACE) study looked at 10 types of trauma in childhood to find they greatly increase risk for chronic illnesses, including autoimmune diseases (you can calculate your ACE score on this ACEs post and in a second post get free ACE fact sheets to educate your doctor with tips on how to use them).
ACEs education is beginning to be spread by the media, and to happen in schools, in mental health settings and slowly in pediatric medicine and beyond.
January 2021 update:
I used to think my ACE score was Zero. I now understand it to be a Two.
It took me years to recognize that I experienced very subtle versions of ACEs that I would place at the “covert” end of the ACEs spectrum. These can be hard to see. Yet our nervous systems still perceive and experience them as adversity. Below are two ACEs I hadn’t realized I’d experienced before.
Ultimately, defining what is or isn’t an adverse experience is about noticing what happens in your body when you think or talk about it. Having sensations such as tightness, anxiety, numbness, disconnection, overwhelm, a flare up, or freeze suggest such experiences may have indeed been traumatic or overwhelming for you and may still be unresolved. You can respect this response about past events whether they were big or small. Our bodies don’t lie. Our symptoms don’t either. Once we have this information, it can be corroborated with an enormous body of research that supports it all.
As of January 2021 I think of my ACEs as including the following:
I. Parental Mental Illness: My mother had undiagnosed postpartum depression that I learned about in recent years (“mental illness” in a parent does not have to be severe or lifelong to have an impact on a child. Effects are often most profound in our earliest years when our immature nervous systems and physiologies are most dependent on adult caregiving.)
II. Emotional Neglect. Healing complex PTSD has been the longest and hardest part of the journey, and also the most subtle and the most difficult to recognize. One step I took in 2018, which involved setting boundaries, helped resolve years of severe food intolerances. This is such an important and overlooked type of adversity that I’ve given it an entire category of its own (see section 5).
4. My Adverse Childhood Experiences Plus (ACEs+)
I use the term ACEs Plus to cover types of childhood adversity before our 18th birthdays that are not included in the 10 ACEs. Many of these are covert and subtle. I experience a familiar pattern of fear as I make these public. It is a fear that I will be judged, or seen as whiny, overdramatizing etc. This is a common response to naming our traumas and happens because we have experienced shaming or judgement, denial or blame for seeking support or help for these very issues and the painful experiences associated with them, such as from our parents when we were children (and later from adults who don’t understand or recognize adversity and its effects). I share some of the events below to validate their impact for others, and to help others recognize challenging childhood events that may have affected them as well.
I. Parental Conflict. This ACE+ is very subtle in comparison to domestic violence between adults in the household. In my case it involves relative tension and emotional conflict, shame and judgment in my parents’ relationship. These behaviors seem so mild. The overt tension only happened some of the time. There was no hint or concern for my physical safety. Yet these experiences had an impact on me. To this day I can still get distressed or somehow caught in these conflicts with a part of me (like the child I was) still wanting to “solve” it. I’m getting better at how to work with it and by setting new boundaries.
II. Hospitalization. I was hospitalized twice for asthma as a child. Hospitalization can be traumatizing in part because of the life-threatening nature of an illness requiring such care. It’s also because separation from parents, which can be for hours or days during illness, can be traumatizing for a child. Early separation is also a risk factor for asthma. Medical treatment and procedures can also be terrifying, painful and traumatizing. I have two images from my experiences in the hospital. The first is of a kind nurse who read stories to me. The second is of the large crib I was in, surrounded by shiny metal bars, as I observed from the ceiling near the door to my room. Watching from above is a hallmark of dissociation (freeze) and is common in children experiencing trauma.
III. Loss. Losing my beloved dog may have been another traumatic event in my childhood. The impact was compounded by the fact that my parents, trying to spare me pain, told me that he’d run away when in actuality they’d had to remove him from our house because the doctors wouldn’t let me return home from the hospital until all our animals were gone. This happened when I’d been hospitalized a second time for asthma and was due to severe allergies I had suddenly developed. These events seemed normal to me. But they are actually the “little traumas” – the “ordinary” traumas – that influence long-term health just as much as the extraordinary traumas do. They just do so in an almost invisible, easy-to-overlook kind of way.
IV. Drowning. I experienced a near-drowning as a toddler and was found at the bottom of the pool. Perhaps because no apparent harm was caused and no resuscitation was needed it was never mentioned until a few years ago in a conversation with my parents. To survive a drowning involves closing of the airways and very likely a freeze response – perhaps this had an influence on my risk for asthma and ME/CFS, which I see as both stemming from freeze responses.
V. Covert Incest. This is the hardest ACE+ to name. It was very subtle, and I feel very vulnerable sharing it. It is still difficult to recognize the forms it took and still takes. It is challenging to name and acknowledge, in part because no one in my family would likely recognize this even if I described it directly or gave examples. Or maybe they’d recognize it but would then promptly “forget” and it would never be discussed again. It’s also hard to make such a statement because we fear causing shame or harm to those who don’t even (consciously) realize they are doing it. But it has had an impact nonetheless.
Part of this insight came from observing my Family Constellation in Spain. In that constellation the person representing me left the circle the moment the person representing my father entered. The facilitator commented that this was significant and that it reflected something important and not okay in the relationship from my father. I was able to see and feel it more clearly in my next visit home. I’ve started setting subtle new boundaries and making subtle changes to work through this now that I am more aware of it.
VI. Spanking. Physical abuse does not have to be overt, severe or frequent to have a long-term impact on a child. Like many kids in the US (possibly over 80%), I was spanked. I don’t think it was often or severe but don’t recall details. While many people who spank or have been spanked say it’s not a big deal, the data suggests otherwise. Hitting is a violation from the very adult caregivers who are supposed to protect their children. It can therefore deeply alter the trust a child has in their parents as well as their sense of self worth, safety and more. Spanking has been recommended as an ACE by more than one voice including at ACEs Connection. The arguments on the negative impacts of spanking are summarized in this thorough overview in Psychology Today as well as in The Atlantic and on NPR.
VII. Emotional / Psychological abuse is also part of my story. This is another seemingly very mild version of an ACE. To name one example, I experienced a great deal of advice-giving growing up. When I think of it and notice how my body feels when I imagine being given this kind of invasive advice as I write, it’s as though a part of me no longer exists. Only my mother’s opinion from back then, which she perceived as “the right one,” existed (what to eat, what not to eat, how much to eat; what to wear; how to wear my hair; how long she thought my hair should be etc). Attempts to point it out in adulthood demonstrated why I had a freeze response to speaking up about it (this is a trauma response). My pattern has been to stay quiet, because she either disagreed, didn’t see it, or became defensive. This inability to be heard is part of what can turns seemingly innocuous experiences into traumas, especially when they happen day in and day out for 17 years.
On one occasion when I had an outright fight response and snapped at her a few years ago, she verbally attacked me. Later, she explained that she wasn’t going to change. She actually has changed significantly since a conversation in 2018, when I was able to speak gently and use an example that she understood. My mother, of course, got this kind of advice from her own family as well and found it profoundly irritating too. Watching her experience the same pattern helped me use it as an example for her. Helping her see that she was doing the same thing to me was what finally got through to her. It took me 20 years of trauma therapy to get to the point where I could do this. When she finally got it – which seemed in large part because I was regulated and calm enough and able to share a useful example – she changed. This process highlights one small example of subtle abuse. It persisted well into my adulthood and has influenced my ability to speak up, especially in some (not all) circumstances when someone disagrees with me. Blogging has been one way I’ve begun to help my freeze pattern around this shift as I build my arguments and can say what feels important at my own pace.
The research shows that any event that elicits states of relative helplessness, even if that is an overwhelming emotion that does not get soothed or supported, are significant risk factors for long-term health conditions.
Learn more about my subtle ACEs+ in My Prediabetes Story.
5. My Adverse Childhood Relationship Experiences (ACREs)
Of all the different types of trauma, this one may be the most subtle and difficult to recognize. It may also be among the most potent in affecting long-term health.
I refer to this area as invisible ACEs or adverse childhood relationship experiences (ACREs).
I love my parents and they occasionally read my blog, so I write about this topic primarily using examples from research, TV, movies and books, and other people’s stories. I have, however, recently begun to share some of my personal story such as in a post on how I overcame years of severe food intolerances by healing ACREs.
This type of trauma can arise when parents are too busy, depressed, involved in their own lives or distressed to actually relate to their children in reliably nurturing, soothing, calming, supportive ways.
A health, nurturing attuning parent is able to help a child identify and cope with difficult feelings such as grief, anger, hurt, and fear – even if the source is the parent themselves. A healthy, strong attachment bond means paying attention to a child’s emotional as well as physical states and inquiring about them and their feelings, their wants and hopes, and what holds meaning for them. It means connecting in a vulnerable, relational way and repairing the inevitable mistakes all parents make, by naming what happened, apologizing, and being willing to change their behaviors and to keep learning and growing. This type of behavior is the underlying blueprint we all have and that represents healthy relationships.
As individuals we tend to discount or overlook links between this type of trauma and ME/CFS (as well as other chronic illnesses). This is because the families we grow up in are all we know about relationship. They are where we learn what to think of as normal and what to accept as normal, even when it’s not.
In our Western cultures we don’t generally recognize how attachment is missing. Furthermore, many parents have too little support, insufficient if any feedback, education or support to recognize what they are doing (and not doing). They don’t have a lot of healthy guidance to help them find their way.
I’ve done a great deal of personal work to heal the effects of my experiences and it has made a huge difference in my emotional and physical health.
The descriptions in the following memoirs are far more extreme than my own but give you an idea of what is meant by attachment trauma, which is sometimes referred to as relational trauma, complex trauma and also as complex PTSD. Examples of attachment trauma include:
- Childhood Disrupted (a journalist with autoimmune and other chronic illnesses)
- Through the Shadowlands (a journalist & mathematician with ME/CFS and mold sensitivities)
- Lab Girl (a research scientist with bipolar disorder)
- The Center Cannot Hold (a university professor with schizophrenia)
6. Adverse Adult Experiences (AAEs)
Chronic diseases often start within days or months of a stressful or traumatic event. People who develop chronic conditions often have a history of more trauma than their healthy counterparts in the years prior. The varying delay between exposure and onset of symptoms is also seen in trauma and PTSD. It is often referred to as a “latency period.” The literature also finds that stress increases our susceptibility to infections, which are common triggers for many people who develop a chronic illnesses yet for whom treatment of the infection does not lead to recovery.
I had never considered that experiences before the onset of my symptoms could have affected me until I learned about trauma. Once I looked with an inquiring mind, the events in my own life were hard to miss.
In the 10 years before my first symptoms of ME/CFS started I was in 2 car accidents, one of which was a roll over at 70 miles per hour. I wasn’t hurt in either one, and had dismissed them as so many of us do when we don’t sustain physical wounds.
Trigger warning for the next event.
I always thought the caution and hesitation I have around my sexuality stemmed solely from a traumatic event when I was assaulted as a 20-year-old college student. I now suspect it’s more than that and involves the earlier-mentioned history of covert incest. The assault, however, was a big deal even though it was never talked about again after the first month passed. It wasn’t until my mother asked about bruises on my face when I saw her a week later that I remembered having them (or knew then but forgot in the years afterwards). This partial loss of memory is an example of the disconnection that comes with the freeze response and is another reason I hadn’t considered this AAE in my history. I’d partly “forgotten” that it had happened.
In the 7 years prior to the onset of my symptoms I had been in medical training and then teaching full time, working 60-100 hours a week. I had witnessed death, assisted in difficult births and cared for patients who’d been in severe accidents or suffered terrible losses, neglect or abuse. I often felt overwhelmed during these years. One does not have to experience trauma directly to suffer the effects. Being a witness to trauma is a common risk factor for physical and mental health conditions as well as crises in those who are in the helping professions.
I had also developed a lump in the roof of my mouth during my years of medical training, which had been diagnosed as cancer. I had surgery under general anesthesia to remove it.
And in the year or so after the surgery, I got depressed. I improved somewhat on prozac, which I took for about a year and a half until I completed my training.
Other Potential Risk Factors. In the few years before the onset of my first symptoms ME/CFS I also received a number of immunizations including a rubella vaccine and a series for protection against hepatitis B. I never developed an immunity to the hep B vaccine in follow up tests, which was unusual.
Vaccines and toxins are sometimes triggers for the onset of chronic illnesses of all kinds, including ME/CFS. This may not be because the vaccines themselves are inherent sources or causes of disease. Cell danger response theory proposes that these pre-onset triggers act as final stimulants to a nervous system that is already perched on the edge of getting caught or stuck in a prolonged threat response.
What additional literature suggested as I began to put it all together, was that trauma can make us more sensitive to the effects of environmental factors such as vaccines, mold, toxins, and other environmental stressors such as infections, which are a common trigger for ME/CFS, type 1 diabetes and other chronic diseases. In fact, studies have found that stress and trauma before these kinds of exposures can increase our inflammatory responses and amplify the effects of exposure. Such effects are even more common in women (4)Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosom Med 71(2) February 1, 2009): 243-250. Abstract
Insights I Gained. When I began to “get” the big picture from my history, I saw more clearly how risk related to trauma is not about a single event – whether big or small. It’s because the effects of life experiences add up over years, decades and generations. And it seems to be about “balance.” There’s an interweaving and an interplay between the successes, support and resources we and our ancestors experience on the one hand, and the stressors and traumas we’ve had on the other. It’s a complex dance, which I think is also why it can be so challenging to identify the effects of trauma in our lives and in the research, as well as in the process of healing.
7. Adverse Pre-Onset Experiences (APOEs)
60% of people with ME/CFS have a sudden onset. I suspect most of these individuals can identify a trigger, as described in Dr. Robert Naviaux’ study finding altered metabolism in people with ME/CFS. For those of us with a gradual onset like mine, it’s much more difficult. For me I suspect the last straws were the years of increased stress during my medical training and career, including the witnessing of trauma and its effects. But there is one period that I think of as my very first symptom, which was when I started resting my head on my chin when I had a moment to sit down in between seeing patients. My head had never felt heavier. I thought it was just the fatigue of long hours. It started when I was working with pregnant women at high risk. I’ve since learned of my own ABEs and that there were ABEs in both of my parents’ lives (my mom was born after her mother had 2 miscarriages; my father’s mom almost died from a hemorrhage after her emergency cesarean with him). I’ve long wondered if that “exposure” was the last straw even that shifted my state and headed it towards an increasingly strong freeze response.
Learn more in My Prediabetes Story on what I learned about an APOE that triggered a spike in weight gain when I was in my 20s and subtle adverse events in childhood (ACEs+) that also affected my weight and health.
8. Adverse Institutional Experiences (AIEs)
I added the role of discrimination – for any reason – as a risk factor for chronic illness in 2018. As a white woman who grew up middle class and then became a doctor I’ve had privilege all of my life. I’ve also experienced discrimination for my gender. It has mostly been subtle. One example comes from a time I worked shifts in the emergency room and sometimes took advantage of the escort service offered by the hospital security, who would walk me to my car when I got off during the wee hours. One night the two men (they were always men) joked with me about their role in protecting me from getting jumped and said they’d be happy to jump me instead if they could. They were teasing me and I think they felt they were offering me a compliment. For me it was disturbing and a sign of just how unaware they were, even as their sole purpose for being there was for my protection.
In a country that elects a president who boasts about assaulting women, I have long been aware of my vulnerability. I do things most women learn, such as paying extra attention to my surroundings when I am out after dark and making sure I have easy access to my car keys. My husband was shocked recently to discover that women do this and then to learn that I do it too as a normal part of my self protection.
I am also acutely aware of women in positions of relative power – and how few there still are even as it is improving. Such as when I walk through first class on an airplane or notice who holds high level positions in companies and politics. I note what women are supported to do and say, what gets judged or appears weak, and how this promotes states of relative shut down, freeze from having to take care with what we say and do. I wonder how much of this plays a role in higher rates of autoimmune diseases in women. I also see that things are beginning to change, such as with the #MeToo movement and mobilization happening since 2016 with an example of how women have started running for political appointments in See Jane Win.
My assault happened soon after I found myself to be the only white person on the bus home to where I was staying with my grandmother in Oakland during a college semester. I suspect I was followed and that the person returned to hide in the basement and break into the house in the middle of the night. During the SE sessions that helped me heal from what had happened decades later, I came to see the roles that racism, inequality and social injustice played in fostering this person to take such an action.
There is an emerging body of research now identifying events that protect and buffer children from the short and long-term effects of ACEs.
They are referred to as anti-ACEs or counter-ACEs.
Counter-ACEs include a childhood where one likes school, has teachers who care, has friends, has opportunities to have fun, a regular schedule and good neighbours. All of which I had. I also grew up middle class, and had comforting beliefs (such as in a God and in reincarnation). Another set of supportive resources are that my parents do and did believe many things about me, saw my potential, supported me to get the highest education I could, and have never doubted my chronic illness nor ever judged the way I’ve worked with it. They’ve had great respect for my research in trauma and healing and the work I’m doing even though it’s not been something they fully “get” as it relates to our family.
This is the list of Counter-ACEs from a research study:
- Having good friends & neighbors
- Beliefs that provide comfort
- Liking school
- Teachers who care
- A caregiver who you feel safe with
- Opportunities to have fun
- Feeling comfortable with yourself
- A predictable home routine like regular meals and bedtimes
Trauma and ME/CFS: 7 Ways The Science Makes Sense of Symptoms
When I started looking at my history from a trauma perspective a number of insights emerged. Here are a few of them.
1. Identifying & Understanding Trauma Triggers Can Help with Flare-Ups. One of my first questions about whether my symptoms of fatigue might be linked to past trauma was whether flares really came out of the blue or followed some kind of reminder of a past event. Triggers are reminders of past traumas that stimulate symptoms of PTSD, such as how the sound of a helicopter or gunfire can make a war veteran break into a cold sweat, duck for cover or experience feelings of panic. Triggers often occur outside of conscious awareness and our responses are driven by the nervous system, not by will. These reminders aren’t just linked to PTSD but can also occur with other symptoms.
It took me more than a year of watching to I identify one of my first triggers. I had been in a flare-up with much worsened fatigue for about 10 days when I wondered, not for the first time, whether something had stimulated the sudden onset of this increase in exhaustion. I realized all of a sudden that my flare had indeed started within hours of a phone conversation with a friend who had attended a home birth. It had been a pretty stressful labor and somewhat difficult birth and could have gone terribly wrong. My friend had had successful pregnancies and deliveries of her own and was also a health care professional but had no training in obstetrics or midwifery. All had turned out better than okay. I had felt a little stressed by the conversation and then forgotten about it. Within 2 hours of this insight making the connection to this trigger, my flare had completely resolved.
I’ve learned that obstetrical events can be big triggers of my fatigue flares for me. The trigger stems from many of the challenges I saw and experienced when assisting women in childbirth, probably from my prenatal experiences, and also very likely from my multigenerational history described above. This is an example of how different traumas can link together and their effects can add up over time. It’s also an example of just how sneaky and difficult to identify triggers can be if they go back to very early and multigenerational trauma (5)Wolynn, M. (2016). It Didn’t Start With You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle. I’ve caught many other kinds of triggers in similar ways since then and there are fewer of them as a result of the healing I’ve done. Even though I recognize some of my triggers and can predict and prepare for some of them, however, others are often elusive and remain outside of my awareness.
2. Depression and Suicidal Thoughts: Symptoms of Trauma. I had feelings of depression throughout most of my childhood, teens and 20s that I never talked about. It seemed somehow “normal,” and at the very least, unfixable. I regularly had thoughts of suicide and at one point in my 20s I also had a plan in the event that my episodes of depression continued (I have since developed spiritual beliefs, followed by the empowering perspectives described here and long ago decided that shortening my life is not something I will choose).
In learning about the research and connecting the dots between trauma and ME/CFS, I learned that depression is one of 3 most common effects of traumatic stress (PTSD and anxiety are the others). Depression and other symptoms can also arise from multigenerational trauma, especially in relation to events that have not been talked about or handed down as part of the family lore, like my great grandmother’s suicide that I knew nothing about until decades later.
3. Depression Can Be An Expression Of The Freeze State. From my training and personal experiences I’ve come to see my periods of depression as an expression of the freeze state. This state happens in humans as well as mammals, birds, insects and other creatures. The freeze state is a defensive response to threats to survival that cannot otherwise be escaped such as by fight or flight. Depression can also be triggered by feelings of helplessness, which I often felt as a doctor because of the limits to my ability to help so many of my patients.
4. ME/CFS as an Expression of the Freeze State. From a similar perspective to what I learned about depression, understanding links between trauma and ME/CFS has lead me to see my ME/CFS as a physical expression of a nervous system caught in a state of freeze. My sense is that my nervous system actively keeps me in relative “hibernation” through whatever means it learned through my adverse life experiences – whether through altered mitochondrial function, enzyme patterns or other physiological processes associated with states of freeze. Interestingly enough, one study in 2016 found that the metabolites from worms, who also enter states of relative freeze or hibernation during periods of threat are remarkably similar to the metabolites seen in people with ME/CFS (6)Naviaux, R. K., et al. (2016). “Metabolic features of chronic fatigue syndrome.” Proc Natl Acad Sci U S A. PDF., (7)Worms and ME/CFS in Hibernation study described in The Economist, (8)Naviaux findings about worm metabolites on ME/CFS blog Health Rising. Naviaux, the author of the study, refers to this as a “cell danger response” also known as the “CDR.” You can read about freeze, the nervous system, and the CDR in ME/CFS and my summary of the CDR or learn more in the free downloadable pdf of the CDR post below.
5. ME/CFS and Depression are Two Expressions of the Same Process. For the first half of my life my nervous system leaned in the direction of emotional symptoms of freeze through depression. In the later half, this pattern of freeze has manifested itself through physical illness, which I suspect is a deeper expression of the same physiological state. I see both as rooted in subtle and repeated exposures to the 8 categories of trauma I described above.
6. The Positive Effects of Resources, Support and Treatment Add Up.
Just as the effects of stress and trauma can add up to increase risk of developing symptoms such as PTSD or chronic disease, the effects of resources and support add up too. I think of it as “planting seeds.”
Therapies for unwinding unresolved trauma patterns in the nervous system have made the clearest and most positive impact for my physical as well as emotional health. The process, however, has been relatively slow and other resources have supported these shifts during that time. These have included diet, slowing down, mind-body practices such as mindfulness; support from family or friends, time in nature or with hobbies; and also from other treatments including acupuncture, craniosacral therapy, homeopathy and others. Here are my favorite 11 tools.
Resources can also help shift so that we can appreciate and take in new or existing support in our lives.
As I got slowly better I also had more capacity and desire to interact with friends. The biggest change, however, was meeting someone after being single for most of life. David and I met in 2007 when my symptoms of ME/CFS were still worsening and he proposed to me a month after I started improving ever so slightly after my 9 months of being nearly bed-ridden. It defies all beliefs that we have to be any certain way for someone to love us. Or for us to love another.
David and I will have been married for 10 years in 2021. Having a loving, supportive, caring other in my life has been a huge new resource and a source of tremendous growth and learning and healing as well. For both of us.
While my initial attempts to decrease my stress levels and then change careers did not cure my ME/CFS, they may very well have slowed down the pace of worsening I may otherwise have had. And they also laid a foundation for each additional supportive treatment approach to help me change direction from a downward trend of worsening to a gradual upward direction of improvement.
Like trauma, resources and connection also influence our genes through epigenetics and appear capable of reversing the effects of adverse events, even when such events happened in the distant past.
7. Trauma Can Increase Symptoms or Cause Side Effects By Triggering Defense Responses. Seeing the links between trauma and ME/CFS has lead me to suspect that when I get worse from treatments I try, it’s because my symptoms are my body’s intelligent, albeit now misplaced, attempt to maximize my survival until the “threat” is gone. From personal work, as well as training in trauma perspectives (including in Somatic Experiencing (9)Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic and Sensorimotor Psychotherapy the brain’s response is sometimes, “If you remove this
symptom defense response I will have to resort to some other symptom protective response to keep you safe.” This is one way in which trauma differs from stress. The effects of trauma heal – and symptoms along with them – when the inaccurate perception is resolved, which happens naturally with a little time and support for many and is facilitated by trauma therapies and other approaches for the rest of us.
I suspect that other chronic diseases are similarly expressions of nervous systems, immune systems and other organ systems interrupted by experiences of trauma.
Here are some ending thoughts on what I’ve learned from the science and applied to making sense of trauma and ME/CFS. I share more, along with research, in other blog posts on this website.
Life Experiences Affect Both Physical and Mental Health. Our understanding of trauma is growing and what we are learning from looking at its role in chronic illness is that life experiences affect our bodies and physiologies as well as our minds and emotions. This process occurs through epigenetics, which are tiny chemicals that affect how genes act as well as how active (or inactive) they are. It also happens as a result of brain plasticity. It’s not psychosomatic, it’s because life events alter our genes and our nervous systems.
Trauma Differs from Stress. The science of trauma explained why de-stressing by slowing down and taking a year off; changing careers; finding new work that fed my soul; entering into a supportive, long-term intimate relationship; and drastically changing my diet, were not enough to cure me or even prevent my chronic fatigue from getting worse. It took trauma therapy on top of all of these, combined with stopping completely and more, to change the direction of my health over a period of time. What I’ve learned is that trauma has different effects from stress. And that healing the effects of trauma may be a vital and missing piece that supports healing to the fullest extent that is possible. Learn more in ebook 1.
Risk Factors for Chronic Conditions May be More Similar than Different. Many risk factors for mental illness and chronic illness are similar rather than different. The 8 types of risk factors I discovered in my life have all been found to increase risk for mental health conditions as well as chronic physical health conditions and chronic illness. Learn more in this summary post.
Prevention. Research is under way that may help with prevention of mental illness and chronic disease. One program at Columbia is currently studying how helping mothers bond and connect with their premature babies can help both moms and babies. They are finding, even in the first few years, that the premies whose mothers had more support for connecting to them have fewer developmental delays, cognitive deficits, risk for autism and other characteristics than their peers. Approaches for healing trauma, which already exist and will continue to evolve with time, may offer powerful approaches for treating chronic illness even after onset.
Healing, Recovery and Cure. The extent to which recovery can occur is not yet known and the pace of healing trauma is unique for everyone. In my own case, it’s not been a quick fix. But my fatigue has greatly improved. My asthma stabilized over the years and is minimal now. I may or may not have one night of airway tightness with a bad cold or the flu and I no longer develop bronchitis after getting sick as I did for decades. My symptoms of IBS (irritable bowel syndrome) are improving after more than a decade of worsening. I’ve been unable to tolerate probiotics, digestive enzymes, vitamins and all other medications and treatments for many years, including abdominal massage which was helpful the first time and then had an increasingly delayed effect on bowel function with each session until it no longer made any difference (a trauma pattern I mentioned in #6 of the previous section). I’ve experienced a direct correlation to improved gut function from healing attachment trauma.
For other people, the effects of healing trauma are much faster and can lead to cures. Read Stephan Hausner’s book “Even if it Costs Me My Life” with a focus on multigenerational trauma’s effects on risk for chronic illnesses of all kinds – and case studies of improvement and healing.
Mark Wolynn’s book “It Didn’t Start With You” shares his own story of recovery from autoimmune disease along with case studies of all kinds of recoveries by addressing multigenerational traumas.
Tony Madrid’s, “The Mother and Child Reunion: Repairing the Broken Bond“) on how trauma in a mother’s life around and during the time of pregnancy interferes with her natural ability to bond with her child and how healing this trauma can help her child’s asthma resolve.
Autobiographies with some of the science and stories of improvement: see Donna Jackson Nakazawa’s “Chidhood Disrupted,” and Julie Rehymeyer’s “Through the Shadowlands“.
Understanding trauma and its effects may make all the difference for many of us living with debilitating and life limiting conditions by offering a context, helping us identify tools that appeal to us, identifying triggers and preventing flares and much more.
This perspective can change the way we think of health and the way we practice health care.
I suspect we’ll be surprised at what emerges in this exploration – in the best possible way.
My ME/CFS story and recovering from food intolerances (ACREs II)
My ME/CFS story and healing shame, triggers and flares (ACREs III)
Other people’s stories aka “Chrillogs”
My Free eBooks
Books and Therapies for Healing Trauma (a list of my favorite modalities with links for finding therapists around the world)
Healing Guide: Planting Seeds for 8 Categories of Trauma
11 Tools for Healing
Resource Posts and How I Work with Symptoms from Trauma Perspectives
Summary of my Chronic Illness & Trauma Research and Views – blog post
Part 1 of 4 about the onset of my ME/CFS and what I tried
|↑1||Caldwell, C. (1996). Getting Our Bodies Back: Recovery, healing, and transformation through body-centered psychotherapy, Shambhala|
|↑2||Mead, V. (1999). Body Centered Theories of Addiction. Naropa University, Paper written in Somatic Psychology Masters Level Program, for class on “Theories of Somatic Psychology” (Christine Caldwell). Boulder, Colorado|
|↑3||Baldwin, D. V. (2013). “Primitive mechanisms of trauma response: an evolutionary perspective on trauma-related disorders.” Neurosci Biobehav Rev 37(8): 1549-1566|
|↑4||Dube, S. R., et al. (2009). “Cumulative Childhood Stress and Autoimmune Diseases in Adults.” Psychosom Med 71(2) February 1, 2009): 243-250. Abstract|
|↑5||Wolynn, M. (2016). It Didn’t Start With You: How Inherited Family Trauma Shapes Who We Are and How to End the Cycle|
|↑6||Naviaux, R. K., et al. (2016). “Metabolic features of chronic fatigue syndrome.” Proc Natl Acad Sci U S A. PDF.|
|↑7||Worms and ME/CFS in Hibernation study described in The Economist|
|↑8||Naviaux findings about worm metabolites on ME/CFS blog Health Rising|
|↑9||Levine, P. A. (2010). In an Unspoken Voice: How the body releases trauma and restores goodness. Berkeley, North Atlantic|
Heather Tuba says
Veronique, this post is extremely useful in normalizing, identifying, and providing highly-plausible answers to chronic illness. I find the part about birth trauma fascinating. I think (as I’ve said before) it is an often-overlooked and misunderstood area of trauma–even though it is one of the most vulnerable periods of the lifespan. Thank you for sharing your story as it is helpful in providing readers with examples of both big and little traumas. As always, well-written and thorough. Thank you for taking the time to write this! Looking forward to your next post.
Veronique Mead, MD, MA says
Thanks Heather for your kindness around my story. It took me a while to figure out how to share it to this extent :-). And I know what you mean – some of these discoveries (such as the birth trauma) have been so surprising to me and so far outside of how I ever thought!
Patricia Fero says
In October of 2016, I finished a monograph about potential indicators of early onset of CFS in children. By necessity, chapter one is about me, the mom who did not know she was sick, sick.
1980 Trip to UK…Oh what fun until I became ill and stayed ill (104 Temp.) for 2 weeks. Onset of CFS, later diagnosed as ME.
1982 Birth of 33 week baby. Mom with Gestational Diabetes that stayed as Type 1, an unwanted companion.
As I summarized medical records I was surprised to find so many indicators that SOMETHING was terribly wrong with my son from birth on. It was not apparent on any scale of the normal, but nuanced.
I read Cort Johnson’s article which is how I got to your blog. I can document with medical records exactly what you conclude. I am not an MD, but an old time advocate. I had a poster at the IACFS conference in October of 2016. I gave out copies of the monograph – unpublished and probably a bit long. HOWEVER I knew I was right with no science to back my conclusions. Would you e mail me, please?
Veronique Mead, MD, MA says
There’s nothing like personal experience to help us connect the dots even if no one else sees it or is talking about it. And sharing our stories seems really helpful too. Our stories provide the kinds of details you simply can’t track in large studies.
So are you saying that your mom developed gestational then T1D, that you have ME/CFS, and that something is going on for your son since birth as well although in a nuanced, as yet not-fitting-a-diagnosis kind of way?
How stressful for you all! I’ve sent you two emails and would love to read your monograph. For some reason both tries are returning to me as problems with mail delivery. You can email me veronique (at) chronicillnesstraumastudies.com
Everything you’ve written makes so much sense to me. When I was first diagnosed with M.E. back in 1995, my consultant asked about my history, both medical and emotional. He recognised then that my M.E. was most probably my body’s response to trauma and stress. I haven’t read anything that supported his theory until I read your blog today.
I wrote a piece for Health Rising a few years back and I think if you read that you would see the correlation with life events and increases in my disability. https://www.healthrising.org/blog/2014/01/22/nineteen-years-counting-tishas-chronic-fatigue-syndrome-story/
What I didn’t mention in that blog post was that I was in an increasingly abusive relationship for 26 years from when I was 22 until I eventually managed to leave when I was 48. There are far too many emotions involved in living within the stress of an abusive marriage to condense into a few lines, but suffice to say, I am sure this too was/is a factor in my ongoing chronic M.E. I am now 61 and have been happily married to a wonderful caring man for 10 years.
I look forward to reading more of your insightful posts.
Veronique Mead, MD, MA says
I just read your post on Cort’s blog. You’ve been through so much – both leading up to and since the onset of your first symptoms. I, too, remember the very first symptom and where I was when it happened. Mine was simply feeling that my head was too heavy to hold up on it’s own. I was seeing patients in clinic and had had a moment to sit down when I noticed this and cradled my chin on my hand. It simply didn’t feel “normal.”
And you’ve also done so much work seeking recovery. It’s wonderful that you had such a compassionate-sounding physician who diagnosed you with ME/CFS even if others might not have been and it was long ago. Congratulations on leaving your abusive relationship and finding happiness. That is so huge and must have taken a lot of courage. I see it as a testament to just how much you strive and have done for yourself.
Given all the searching you describe in your post without finding perspectives similar to what you’ve figured out, consider looking into trauma therapies. They work with healing patterns of nervous system dysregulation that link to perceptions of threat. Surgery, pain, life-threatening illness such as cancer etc – can all be worked with from these perspectives and may, over time, gradually help with your symptoms. It’s not quick, but it’s a way to begin to address the effects of the kind of experiences you’ve been through, including an abusive marriage. Here’s my list of a few therapies I like and links to finding someone perhaps in your area.
Thank you Veronique for your kind reply.
I feel a great sense of optimism and have this morning ordered the Peter Levine book ‘Healing Trauma’ . I am so looking forward to learning how to put his theories into practise.
I spoke with a good friend last night and we discussed your ideas. I have sent her a link to your website. She has chronic health problems and also experienced a traumatic childhood. She too is excited at the possibility of reducing her symptoms.
I still have a lot of information to digest from your website but just need to build up some energy first!
Veronique Mead, MD, MA says
I’m so glad to hear this information gives you a sense of optimism. It does for me as well. I hope you find Peter’s writing as fascinating as I have and some of his examples are very encouraging and inspiring as well. If you haven’t found it yet there is a post about the adverse childhood experiences (ACE) studies and risk for autoimmune and other illnesses on my blog in the event it’s helpful to you as well as your friend. I wish you well on this journey!!
Pauline Stephenson says
I have just finished reading this blog and feel so excited as it confirms so much of what I have been suspecting for a while now. I have had CFS/ME for 50 years next year although initially it was diagnosed as depression. After about ten years I was convinced it wasn’t – or at least not exclusively – so I avoided doctors and went down the alternative route. I recovered to the extent that I could work part time with a small amount of social interactions and most people – including family members – never really realised I was ill as I managed to do the essentials. Then a series of life events meant I hit flare after flare and had to begin to think again about what might be behind the downward spiral. It started with the birth of my first grandchild followed within weeks by the sudden death of my father . Within the following nine months my ex husband, father in law and two beloved cats died. The grief made me realise I had many buried emotions. Then my second husband left for one of his students, I developed severe vertigo and later Ramsey Hunt syndrome leaving half of face paralysed. Three years ago my ex returned (at my insistence) with pancreatic cancer . I nursed him for 11 months until he died at home. We remarried during that time. After his death I moved from everyone I knew to live near my daughter. I promptly crashed. Having no other choice but to start looking hard at the underpinning fault lines, I have realised I have huge separation anxiety going back to childhood, lots of unresolved grief from moving countries because of political problems, and (from doing family history) have discovered there is a mass of repeating patterns of loss especially the death of fathers prior to the birth of my dirct ancestors.
I have been reading , keeping journals and looking for triggers. Two have become clear – anniversary dates even those I didn’t consciously know about – and abrupt changes in the weather which remind me of my earlier move from Africa to England. Another trigger is loss of any kind from mislaying something to my cat going walk about. – it doesn’t have to be big to trigger the feelings of ‘lost in space panic’.
I am talking about myself rather more than I had intended as I had really wanted to say thank you for confirming what I was increasingly suspecting. My story is the tip of a family ice berg, I have unresolved grief and other emotions and I certainly have unresolved trauma and I find a great deal of hope in your blog – at least it confirms I am not lazy or hysterical. . I believe your research is of utmost importance and would like to thank you wholeheartedly.
Veronique Mead, MD, MA says
Thank you for sharing some of your story. It fits with everything I’ve been discovering in the research over the years. One way I now put it together is that multigenerational trauma and difficult events in pregnancy, birth and infancy probably initiate risk for chronic illness and other health conditions later in life.
We may never get sick unless we then also experience additional “hits” in childhood and into adulthood. Then it can seem like just one final “trigger” tips us over the edge.
While so many talk about the kinds of events you describe as being part of everyday life, it’s how they add up that can affect us – just as you describe. This is especially true when too much happens too fast, as certainly seemed to be part of your story.
Given the kinds of triggers you’ve identified (and they can be sneaky to discover), then, if you’re not familiar with trauma therapies, consider any one of them for supporting your ongoing process of coping, adjusting and healing. Our bodies are designed to heal – but sometimes, as in your case and mine and many others, they need more support in addition to time and space. This list of therapies on my blog is just one place to start, if it feels helpful.
* I got a lot of comments this morning and only just realized you were responding to My Story rather than the post generating these comments on Health Rising so I edited out my rec to read my story!!
Thanks so much for commenting.
Bee Lilli Bennett says
Hi Veronique. The more I read your story and your insights the more it resonated with me. I have mitochondrial dysfunction leading to CFS and have none of the adrenal, thyroid or gut problems that often precede this condition.
I have done a great deal of work on my life’s traumas but have not looked into the pre-memory years for obvious reasons.
When my Mother was pregnant with me she was being beaten and treated like a slave. She left the relationship when I was 20 months but married a man who abused us in many ways. Needless to say, I was fearful all of my childhood and low in self worth as an adult; hence I married someone who did not treat me well and when that relationship ended I was single for many years but had a boss who was a subtle bully and enjoyed her power over me — swapping one bully for another. I had lots of therapy and have now married a man who treats me kindly . Not long after marrying him I began to be ill but this wasn’t diagnosed for several years (doctors still try to ignore my problems).
Your discussions on pregnancy and early experiences has helped me understand how and why my mind may consider my disease as some sort of protection. Now I wonder how I can help myself heal from that early trauma?
Thank you again for this enlightening explanation.
Veronique Mead, MD, MA says
Dear Bee Lilli,
From your insights and the changes you’ve made in your life – including finding a man who treats you kindly – it is clear you have done a great deal of work on healing trauma. For more info, I give links to therapies for working with early trauma here on my list of therapies page. I wish you all the best on this journey!
Robert christ says
CFS/ME is no more mediated by “trauma” than take your pick, MS, Parkinson’s, lupus, etc. etc. Or in other words everything your saying is just as meaningless to us with ME/CFS as it would be for somebody with diabetes. All the psychobabble in the world isn’t going to cure that condition! Insulin, exercise, calorie restriction, and regulation of sugar or in other words “science” will.
What we need to cure this condition is research into diagnosis’s, causes, prevention and treatments not pseudoscientific “psychobabble” That frankly has gotten us to where we are today. No cure in sight.
Veronique Mead, MD, MA says
You’re view is quite common and many of us have been blamed, shamed and judged for this illness and told it’s all in our heads. Those of us who see links have also been judged for our understanding that life events have played a role in the development of our diseases and told this view is meaningless. There’s a catch-22 for ME/CFS in particular given how much it’s been misperceived and how the focus has needed to be on the pathophysiology.
It’s also true that for many individuals with type 2 diabetes exercise, weight loss, and diet can sometimes (although not always) reverse the disease and that insulin is a lifesaver in type 1 diabetes.
Interestingly enough, there is high quality research showing that adverse life experiences in childhood as well as pregnancy, birth, infancy plays an important role in risk for type 1 diabetes and in some of the chronic diseases you mention as well. And that it’s, at least in part, because such events turn genes on and off and otherwise influence their expression.
As an example, there are two recent prospective studies in Sweden showing that such events increase risk three-fold for development of antibodies associated with risk for type 1 diabetes by the age of two and half years old, and a three-fold greater number of these events in kids who develop T1D by their teens (I had a typo here previously saying “age three.”) There is also additional research for the diseases you mention above and others.
Robert christ says
A lot of the studies that promote the idea that disease can be caused or exasperated by stress are not all that great. Take PACE for instance. While they are promoting something different, (the idea that we are imagining our illness) it gained wide acceptance even though the little evidence they had wasn’t that good. And the lancet is still ignoring the fact they fudged it to make it look better than it was. And this type of “sensationalizing” has been going on for more than 100 years.
Do you have any link’s to studies showing that stress in mothers can alter their dna or that of their offspring? That’s a pretty extraordinary claim!
Veronique Mead, MD, MA says
True. Some of the ME/CFS studies are problematic, with PACE the “star” of such with greatly overstated results. In contrast, the Swedish studies I refer to in my previous comment recruited >10,000 kids in the general population (they were not genetically at risk for type 1 diabetes) and followed them prospectively for 15 years.
Here are links to studies about gene / environment interactions. Just to be clear – maternal behaviors do not change the dna structure of genes. They are one kind of factor that can lead to the addition of small molecules that attach to genes and regulate their expression / turning them on, off and variations in between. This is the field of epigenetics.
This is a 2014 NOVA / PBS article about the effects of human parenting on genes and epigenetics in children and a 2015 study by Romens & Pollack et al “”Associations between early life stress and gene methylation in children.”
One of the landmark studies was conducted by Weaver, Champagne, Meaney, Szyf and colleagues at McGill examining effects of mother rat behaviors on pups. This is the abstract. This is the story describing their research and surprise findings in Discover magazine.
For two good books on the topic consider The Fetal Matrix : Evolution, development and disease (see p 210 for example) by Gluckman (2005)
and Epigenetics: How Environment Shapes Our Genes (chap 4, pp 41-48 & chap 6, pp 67-73), by Richard Francis (2012),
Have you had your genetic mapping done? If yes, any mutations detected?
Veronique Mead, MD, MA says
Hi Neha, Yes – I have a variety of SNPs that are double positive and genetic variant predisposition towards celiac though not the ones that mean I would have it. I also have ME/CFS in multiple relatives on both sides of the family.
Desi Mazdur says
Your blog is very interesting. I’m still going through the various pages. I have not been able to find how you are conducting your research yet. I do understand that you are looking at research papers and probably doing some kind of a meta-analysis. But this is all I know.
Do you need any assistance? For years, I wondered if there is a health care professional who has been suffering from chronic illness and has been motivated and well enough to pursue research. I think I found my answer :-). I want to pitch in if I can and help crowd source your efforts.
You already have my details and feel free to contact.
Once again, thank you for taking this up.
Veronique Mead, MD, MA says
Thanks so much for your offers of support! While I don’t need crowd funding at this time I now have your name as a potential resource :-). Is there something in particular you are looking for or interested in re topics or directions or kinds of support? To get a sense of the research take a look at my discovery series presenting how I learned about studies on various topics, a summary of the science linking trauma as a risk factor for chronic illness, or the adverse childhood experiences (ACEs) post describing the ACEs studies that show increased risk for chronic and autoimmune illness.
Chronically Hopeful Char says
What an incredible journey! I am so happy we bumped into each other online. I look forward to reading more of your content. An am very happy to have you in the ME bloggers group!
I was introduced to EMDR in my latest assessment – last year – it was one of the therapies they put on the table, but in the end their team decided that an OT would be more suitable in my case. I was fascinated about EMDR when I googled it, had never heard of it before. Was actually looking forward to trying it. Never thought of myself as traumatised, but I did have long term emotional stress for many years and I suppose it could be considered an emotional trauma. Fascinating how the body works!
Veronique Mead, MD, MA says
Hi Char / Charlene (I can’t tell if you use this name or your full name might have gotten truncated :-),
It’s great to bump into you too! I just took a look at your site and you are really writing about how it feels to live with chronic fatigue. Big debilitating symptoms take a lot of “relating to,” and I see just how much you work with it simply by the neutral tone you use to write about very difficult things. I’ve experienced many of these places too.
As for your curiosity about EMDR – a) yes, most of us have no idea that adverse life events may have affected how our bodies, nervous systems and other organs function (our doctors and society don’t recognize it yet either but the science is all there) and b) curiosity about approaches for healing is something to trust. Maybe you’ll feel like exploring it someday should you ever have the means or inclination to give it a try! Our bodies are fascinating indeed! V
Ali Kempson says
Hi Veronique. I was so pleased when I came across your blog! I’d written about how I felt a disrupted fight and flight response explained my chronic fatigue syndrome a month or so before on my blog and commented that the only explanation for why I’d developed CFS that I’d found that made sense was a trauma some years before. But because I didn’t find your website, I felt I was shooting in the dark so it feels so good to have my thoughts validated – and expanded! The traumas I mentioned were ones I’d experienced as an adult but I also fit some of the other possibilities you mention here. I’ve now linked my posts to your blog as I think you have so much useful information here:(https://everydaykindoflife.wordpress.com/2018/01/17/fight-or-flight-response/). I wish you the very best on your journey to good health.
Veronique Mead, MD, MA says
How lovely to see you here and I’m so glad the info’s been validating. I am increasingly overwhelmed by the amount of research emerging in support of all these different ways that adverse events affect our physiologies, immune and nervous systems and so much more. I’ve appreciated your blog posts on how you’ve recovered! Glad the information feels helpful enough for sharing – thanks for the link love. May the journey continue in its very best course and thanks for the best wishes! xoxo
Very interesting article!!
I suffer for years with CFS and im still looking for the right treatment.
In CFS they found low blood volume, what could cause the mitochondrial function, like in sepsis. How does this finding fit into this theory?
What do you thing about neuro linguistic programming like it is used in DNRS or amygdala retraining?
I ask, because you mentioned the neuroplasticity of the brain.
In DNRS, for example, they explain CFS with a wrong writing of the brain.
(What i read so far, the highest success rate (claimed) was from these programs and from Goldstein’s betrayal by the brain.)
What could someone do when there will be a future trauma situation (e.g. surgery) and he or she already has CFS?
Veronique Mead, MD, MA says
In looking for treatment I suspect that anything that can decrease our fight, flight and freeze (FFF) responses in a gentle, paced way and / or that can increase the strength of our ventral vagal social nervous system branch that is able to inhibit FFF may be supportive. I’m not personally familiar with DNRs but have heard from one person that it was helpful for some of her symptoms that she had along with ME/CFS. Perhaps amygdala retraining is in a similar camp. I think of the pathways that drive our symptoms as conditioned responses, which may be very stubborn…and sometimes not, so they may need different approaches over time or for each person. See how it feels to you and to your nervous system.
In preparing for potentially traumatic events such as surgery, it helps to plan, prepare, make extra time and space both to calm your system before as well as after, and to support healing with extra time that our bodies are likely to need since they are already challenged with managing environmental stressors. That could look like working with a health practitioner before and after who has some somatically based experience in working with trauma and healing, adding a mind body practice such as meditation, minimizing stressful activities or caretaking of others, and having an advocate with you. Here’s a nice free downloadable handout with tips by a highly respected trauma therapist in the Somatic Experiencing community named Anthony Twig Wheeler. He also has a podcast about it, which I haven’t listened to.
As for low blood volume I am curious whether this is a facet of the freeze / hibernation type of state. I’ve looked it up but haven’t found very much research on it to know whether or not it happens or is a known phenomenon, even as I suspect it may have an underlying intelligent component to it like the rest of what drives our systems from a cell danger response / polyvagal point of view.
And I have heard of one or two journal articles that can be given to the surgeon about ME/CFS responses to anesthesia that may be helpful. I have to see if I can find them and will post if I do.
I hope that helps and wish you well with your procedure!
Veronique Mead, MD, MA says
Here is a link to guidelines for surgery and anesthesia for people with ME/CFS and fibromyalgia, recommending caution with certain drugs because of common reactions of fainting or near fainting (neurologically mediated vasovagal syncope).
It was “created by Dr. Charles Lapp, director emeritus of the Hunter-Hopkins Center in Charlotte (www.drlapp.com/), a clinic specializing in the treatment of CFS and FM. It is meant to be shared with a person’s surgeon and anesthesiologist Last updated: July 2018”
Hope that’s helpful
Christine Richards says
Hi Dr Mead,
I loved reading about your findings. I’m a Social Worker and I’m in private practice doing psychotherapy as an LCSW. I specialize in grief, loss and trauma – which feels like it’s really stuff everyone has, but in which few therapists specialize. I also have multiple chronic illnesses (RA, Fibromyalgia, PCOS, hypothyroidism and endometriosis). I have had multiple traumas and did talk therapy for years – which I found less helpful, and then I did EMDR within the last few years and found it extremely helpful emotionally! I think your findings are extremely important and relevant! The one section I had a visceral response to, and which I found “dangerous” to claim was the paragraph about immunizations. As someone who is immunocompromised and can’t receive live vaccines, I benefit from the herd effect. (I had all my vaccinations as a kid and have had others more recently as I’m able). In the current atmosphere of misinformation about vaccines, measles outbreaks and fears, I worry about the impact of your claim – especially when recent, huge studies show no connection between MMR and negative impacts. Can you help me understand what lead you to this conclusion?
Veronique Mead, MD, MA says
I”m so glad that EMDR has been helpful to you. You describe a common experience in which talk therapy is not typically helpful simply because talking does not access trauma, which is stored outside of conscious awareness and in our nervous systems among other “places.” I don’t know if EMDR is helping with your physical symptoms in addition to the emotional – but if it’s useful here’s a recent post on triggers in RA/RD that stem from early attachment trauma and how working with them from a trauma perspective can begin to help symptoms shift.
Thanks for raising an important question about my statement on vaccines. I’ve updated the post to reflect what I actually mean to convey. Vaccines can be a trigger for onset of disease in some people even as they are not a cause. The science of the cell danger response (CDR) finds that the final event that precedes the onset of many different diseases is not typically a cause. Rather, it is a “last straw” that tips an underlying, previously invisible threat response so that it turns fully on or becomes “stuck.” The CDR theory finds that onset triggers can be as different as mold, infections, toxins or psychological or physical trauma – but that they stimulate existing pathways that lead to particular diseases depending on the pre-existing pathways, rather than being causes themselves. The CDR is a whole new paradigm for thinking of disease.
Hi there Veronique,
I am a psychologist in Australia and work with some clients who have chronic illness as well as a lot of trauma. I am very interested in this area and understanding the relationship between the two, and most importantly how best to work with these people. This blog of yours is the most helpful thing I have found so far. I don’t suffer from any chronic illness myself, but am interested in specialising in this area with clients, because there is a such a need for it. So I just wanted to say hi, and thanks for putting this out there. Lots of good reading for me! if there’s anything in particular you’d recommend for therapists to read, let me know :) – Rebecca
Veronique Mead, MD, MA says
It’s lovely to meet you. It sounds like you’re finding some helpful reading here :0). I have a list of my favorite books on this page. This summary and this blog post about how I see chronic fatigue (which relates to my views on other diseases) may be two of the better summaries if you haven’t yet found them. Hope that helps and wishing you well as you develop your approach.
Rebecca Stuart says
Thank you :)
Cathy Foster says
Great post. Wide-ranging, inclusive of so much exceptional thought and investigation while being well-structured and resourceful too. My respect to you, especially hearing of the place you have now reached in relationships with your family.
Veronique Mead, MD, MA says
Thanks Cathy!! I edited my response as I thought you’d written in response to my latest (other) post and now your comment makes even more sense :-). It was a bit challenging to make public but it feels like a good next step.
Thank you for this article, and thank you for being so open about yourself and the traumas that you have suffered. I have been looking for treatments for CFS. I have had it a few years now. I’m hoping that the information you have provided will help. Really appreciate all your hard work. With love and my warmest wishes.
Veronique Mead, MD, MA says
I’m glad this post – and sharing some of my personal history – feels like it may help and I’m sorry to hear about your CFS. May some of this information be helpful and may you find kind and gentle support for yourself and your body. Wending love and warmest wishes right back.
Hi Veronique! So far, mainstream therapy and EMDR have made no difference in my health, I am about to take on a “Psychedelics therapy” journey. Research is showing that psilocybin, MDMA and other psychedelics can help us process trauma and gain this much needed sense of self love. Also, psilocybin is boosting neuroplasticity.
Is this something you’ve ever looked into?
Veronique Mead, MD, MA says
I have no personal experience working with psychedelics either as a therapist or as a client nor much familiarity with it. Like many approaches for healing trauma, my understanding from reading about it and conversations with therapists is that it can be helpful for some and not for others. It’s likely that it helps a great deal to have a therapist who is deeply informed about trauma and who helps one “titrate” the process to go slowly enough. If you are not familiar, consider looking at Gabor Mate’s work, as he is one I know who uses this approach (although likely more for the area of addictions than chronic illness). There was an interview as part of a summit last summer when his documentary came out (The Wisdom of Trauma, now maybe available on Netflix). I hope that helps and wish you all the best with this process!
I happened upon your website this morning during a flair-up of my ME/CFS symptoms. Good timing as it was nice to be distracted and hear about your story and perspective. I am currently studying Organic Intelligence with Steve Hoskinson (formerly a SE teacher) and he talks about trauma as an unintegrated resource. I started wondering if my symptoms could also be an unintegrated resource and what that process could look like. I appreciate that you draw the connection between symptoms and protective/defensive responses because that was my inkling. I look forward to checking out more of your articles. Thank you for you time and effort!
Veronique Mead, MD, MA says
I’m so sorry to hear about your CFS and flare up. Welcome and here’s to happy (or helpful) distractions! Steve’s was my faculty for a good part of my SEI and I love his work with OI. Yes – I see chronic illness as a reflection of a body caught in prolonged protective/defensive responses. If you haven’t seen them yet, this post on this perspective for CFS might be of interest and this one on the cell danger response (CDR). Wishing you good treasure hunting!!