Chronic Fatigue Syndrome: The Personal Impact
Chronic fatigue syndrome is a crushing diagnosis.
It means your doctors can’t figure out what’s wrong.
It likely means you look good but feel terrible, so no one believes you are fighting for your life.
It means lost energy, wellbeing, potential. Lost earnings. Lost time with children and loved ones. Perhaps loss of who you used to be.
Chronic fatigue syndrome is a world of loss and hurt and struggle. It’s a personal and public health crisis of epic proportions.
Now that what’s wrong with you has a name, are you better off?
What You’ll Find in This Article
In this article I acknowledge the reality and magnitude of this problem—yes, chronic fatigue exists, and its impact is enormous—and dispel the dangerous myth that there is nothing that can be done.
You’ll learn chronic fatigue syndrome is just the name we give to a constellation of problems that result when the body’s ability to make energy is impaired. And you’ll see that through a thoughtful, comprehensive, individualized systems biology and body-mind approach, you can heal. You can recover your energy and get your life back.
You can heal from chronic fatigue syndrome.
What is Chronic Fatigue Syndrome?
Chronic fatigue syndrome is widely understood as a chronic complex disorder characterized by exhaustion that doesn’t go away and worsens with any degree of exertion.
It is frequently accompanied by poor sleep, cognitive dysfunction, muscle soreness, and markedly reduced ability to carry out the usual activities of daily living. Sufferers often experience dizziness, sore throats, joint pain, depression, anxiety, irritable bowel symptoms, tingling and numbness, and a host of symptoms that elude diagnosis by their care providers.
The Institute of Medicine (IOM) estimates that 2.5 million people suffer from chronic fatigue syndrome in the US, mostly women with an average age of onset in the mid-thirties. This is likely a gross underestimation as sufferers of chronic fatigue syndrome frequently elude diagnosis or are misdiagnosed. Many of these folks are dismissed as hypochondriacs when their multitude of symptoms and problems overwhelm their doctors who fail to see the connection between them.
An IOM expert panel has recommended a new name for chronic fatigue syndrome to shift away from the stigma associated with it and to capture the profound intolerance to exertion experienced by sufferers: systemic exercise intolerance disease (SEID).
Regardless of the name, it is important to have a rational strategy for addressing the many causes of chronic fatigue.
How to Know if You Have Chronic Fatigue Syndrome
Within conventional medical circles, the diagnosis of chronic fatigue syndrome (or SEID) is assigned according to the following criteria:
Chronic fatigue syndrome diagnosis requires the presence of these three symptoms:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest; and
- Post-exertional malaise; and
- Unrefreshing sleep.
At least one of the two following manifestations is also required:
- Cognitive impairment; or
- Orthostatic intolerance.
Limitation of Conventional Diagnostic Criteria for Chronic Fatigue Syndrome
Each of the diagnostic criteria for chronic fatigue syndrome are symptoms associated with loss of critical biological energy. They are descriptive only, failing to reflect an understanding of the underlying causes of the energy loss.
Not everyone who suffers from chronic fatigue and serious associated chronic complex illness precisely fit these criteria. In my practice, persistent fatigue with loss of functional capacity and intolerance to exertion is enough to make the diagnosis regardless of the exact constellation of associated symptoms and problems.
Whether you fit these criteria or not, the important thing is that you are working with someone who takes your persistent symptoms seriously, is interested in investigating why they are present, and can guide you on a course of action for sustainable healing.
Ditch the Diagnosis: Chronic Fatigue Syndrome is Always a Symptom of a Larger Underlying Problem
Chronic fatigue syndrome (CFS) has become a diagnosis, but it is not, itself, the problem.
Instead, chronic fatigue syndrome is always a symptom of a larger complex problem.
Chronic Fatigue Syndrome is a Description
Chronic fatigue syndrome describes the dominant symptom complex of the illness, but it is important to understand that having the diagnosis of CFS and meeting its criteria does not define why you have it.
Chronic fatigue syndrome, in itself, is not a disease with well-defined universal features, causes, and treatments.
Instead, it’s merely a description of how you are feeling and a way to organize the symptoms complex to make it easier for doctors to establish a diagnosis.
What we must discover for you to heal:
- Why are you fatigued?
- What’s causing the fatigue and poor exertion tolerance?
There are, in fact, as many causes of chronic fatigue syndrome as people who have it.
To make progress with healing, it helps to put the diagnosis of chronic fatigue syndrome aside. We don’t want it to fool us into thinking we understand what’s wrong with you or get in the way of making a proper diagnosis.
If you feel like you’ve slipped through the cracks of a medical system that hangs its hat on diagnoses and treating diseases, you probably have. You need a fresh strategy.
Chronic Fatigue Syndrome is an Energy Deficit
The common denominator among sufferers of chronic fatigue syndrome is that their bodies are unable to make energy effectively.
This loss of energy production leads to persistent fatigue, exertion or exercise intolerance, and many systemic problems that directly relate to that energy deficit or the root cause of the energy deficit. My job as a physician is to help you sort out what the underlying causes of the energy loss are.
Loss of critical biological energy also leads to the most devastating part of this problem: loss of critical life energy.
We know how critical energy is to our lives. It underpins everything that makes us who we are: our actions and behavior, our inspiration and ideas, our passion and curiosity about the world around us, and our connection to everything in our lives. Every thought, experience, and emotion are energy. It’s our creative life force. Energy is the very essence of who we are.
Energy is what we lose when we are ill or feel depleted in the face of life’s complexities. With chronic fatigue syndrome and the many causes of chronic fatigue, this flow of who we are and where we want to be is blocked.
Let’s talk about how to reclaim this energy.
First, consider how Mary and Jennifer recovered from chronic fatigue.
Story of Mary
For example, Mary had been profoundly fatigued for over a year. She was exhausted all the time, slept poorly, and had achy muscles, joint pain, headaches, “zinging” pain in her feet, and cold intolerance. Multiple doctors, including specialists could find nothing wrong with her and assigned a diagnosis of chronic fatigue syndrome and fibromyalgia (literally means “muscle pain”)—both diagnoses simply descriptions of how she felt.
A crucial part of Mary’s history was that she had experienced a water leak in her basement and black mold had appeared on the walls of one of the rooms. She remediated the area herself, which was when her symptoms started. Further testing showed persistence of the black mold in her environment and the presence of mold toxins in her urine. After removing her from the toxic environment and using a Functional Medicine approach to heal her energy systems, all of her symptoms resolved.
It wasn’t enough to give Mary’s problem a name. We had to find the cause of Mary’s symptoms (mold toxins), remove them from her environment and body, and support her body’s ability to make energy with appropriate energy nutrition. These very straight-forward steps led to Mary’s complete energy recovery.
Story of Jennifer
In another case, Jennifer had been exhausted for several years. She also had diffuse muscle aching, sleep disturbance, and severe constipation with intestinal bloating. Her head felt foggy, she was confused and had difficulty concentrating at work. Any amount of exertion landed her in bed. She spent her weekends sleeping to get ready for the work week. She was depressed and losing hope after many doctors found nothing wrong, but assigned the diagnoses of chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome.
A thorough evaluation revealed Jennifer had small intestinal bacterial overgrowth, severe gluten intolerance, and multiple delayed-type food hypersensitivity reactions. She also had severe deficiencies of a number of nutrients key to manufacturing energy in her body. After a strict food elimination diet, nutrient replacement, and an individualized gut healing regimen, her energy recovered, and all of her symptoms resolved. She was able to get her life back.
Once again, we had to go beyond the diagnoses to discover what was wrong. In Jennifer’s situation, energy impairment came about as a result of the damaging effects of bacterial toxins and chemical mediators of inflammation on the parts of her body responsible for making energy (the brain-thyroid-adrenal-mitochondrial energy operating system—see next section). This damage to her energy systems was compounded by deficiencies in the nutrients required to manufacture energy. We had to carefully solve each of these problems in a step-wise fashion to allow Jennifer’s body to heal, her energy to recover, and for her to get her life back.
What Goes Wrong in Chronic Fatigue Syndrome (CFS): Introduction to the Brain-Thyroid-Adrenal-Mitochondrial (BTAM) Energy Operating System
The core problem in chronic fatigue syndrome is dysfunction of the brain-thyroid-adrenal-mitochondrial (BTAM) energy operating system—the biological system by which we make energy to support all functions of the body.
Primary Components of the Brain-Thyroid-Adrenal-Mitochondrial (BTAM) Energy Operating System
Literally the “brains” of the operation: the brain perceives our energy needs and orchestrates all the aspects of manufacturing and transporting energy throughout the body.
Key components of the brain-energy axis are the hypothalamus and pituitary glands, where key hormones involved in energy production and transportation are regulated.
The thyroid gland is the thermostat for energy regulation throughout the body. The thyroid makes thyroid hormones that regulate work and energy use levels within all body cells.
The adrenal glands are sources of the key hormones cortisol (makes available carbon atom sources used as fuel to make energy), aldosterone (regulates circulation for energy substrate transportation throughout the body), and DHEA (protects the brain from potentially harmful effects of cortisol and participates in learning aspects of stress).
Mitochondria are tiny subcellular organelles within most body cells that use carbon atoms and oxygen to manufacture the chemical energy (ATP) we must have to feel well and run all the business of the body.
What Can Go Wrong With the BTAM Energy Operating System
All aspects of this BTAM energy operating system must be functioning at full capacity to meet our energy needs optimally. This system is very complex with many moving parts, so there are many ways things can go wrong.
Common Temporary Fatigue
We’re all familiar with how it feels to over exert, skip a meal, or skimp on sleep. We feel tired from the temporary energy debt but can recover when we get back on track.
Fatigue Related to More Complex Problems
In chronic fatigue syndrome the problem with the BTAM energy operating system is more complex, leading to more profound and persistent fatigue, and not enough energy to sustain basic body functions.
When any aspect of our BTAM energy operating system has been damaged, we’re at risk for critical energy loss. Damage to the brain and its structures, the thyroid gland, adrenals, and mitochondria can occur as a result of trauma, infection, toxins, or widespread inflammation. All these conditions can be discovered and treated.
Dysfunction of the hypothalamus, pituitary, thyroid, or adrenals are easy to diagnose and can be treated with appropriate measures such as nutrients, hormone replacement, and removal of the damaging influences.
Mitochondrial dysfunction can be genetic, though more commonly it results from loss of essential mitochondrial nutrients and the systemic effects of mitochondrial poisons such as drugs, environmental toxins, infections, allergens, and inflammation. These conditions can likewise be readily diagnosed and treated. Persistent fatigue always raises the question of mitochondrial dysfunction.
To assess and resolve problems with the BTAM energy operating system, work with a health practitioner who is an expert in Functional Medicine.
Common Symptoms of BTAM Energy Operating System Dysfunction
The profound dysfunction of the BTAM energy operating system in CFS is directly responsible for all the most common symptoms experienced by CFS sufferers:
- Muscle pain: short, contracted muscles don’t have enough energy to relax.Brain fog and cognitive dysfunction—the brain is highly energy dependent.
- Dizziness and orthostatic intolerance (POTS or postural orthostatic tachycardia syndrome)—an entirely appropriate response of the cardiovascular system to try to shunt additional blood to vital organs.
- Sleep disturbance—normal sleep patterns require an energy-rich brain.
- Exercise or exertion intolerance—there is no energy reserve for more than survival-oriented functions.
- Mood disturbance—caused by the energy-depleted brain and the emotional response to illness.
- Irritable bowel symptoms—caused by the energy-depleted gut and/or underlying gut disturbance contributing to the energy debt.
Breakthrough Approach to Chronic Fatigue Recovery: Functional Medicine
The breakthrough approach to chronic fatigue and chronic fatigue syndrome recovery is the revolutionary science of Functional Medicine (FM). Follow this link to my in depth article on chronic fatigue treatment.
Centers for Disease Control. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. 2018.
Centers for Disease Control. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—IOM 2015 Diagnostic Criteria.
Institute of Medicine of the National Academies expert panel. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Report for Clinicians. 2015.
Find a Functional Medicine practitioner to work with: The Institute for Functional Medicine, Find a Practitioner. 2019.
Find a Functional Nutrition specialist to work with: Integrative and Functional Nutrition Academy. 2019.
Karyn Shanks MD. How to Treat Chronic Fatigue for Life (Expert Guide). 2019.
Karyn Shanks MD. How to Heal Chronic Fatigue with Energy Nutrition. 2019.
Karyn Shanks MD. How to Heal Chronic Fatigue: Your Beautiful Energy Roadmap. 2019.