Explaining the Unexplainable: Chronic Fatigue Syndrome
Brain research sheds light on how fatigue becomes chronic
Posted Jun 03, 2016
Fatigue occurs for three reasons. In most instances, it is the normal reaction of the body to lack of sleep, overwork, acute illness and acute mental stress. It is a powerful physical reaction to events that sap our energy in a variety of ways. We only recover from these situations by rest and sleep. It may take one good nights sleep or several days of rest to recover from the flu, running a marathon, or working overtime to meet a deadline. But once we obtain that rest and restorative sleep, we recover. The feeling of fatigue goes away as we return to normal states of energy and physical and mental well being.
The second cause of fatigue is chronic illness. People with severe congestive heart disease, renal disease, anemia or chronic pulmonary diseases are often very easily tired. These disorders are often treatable, but when they are severe, the accompanying fatigue can be difficult to reverse. In addition, those with low thyroid, low testosterone, and other hormonal disorders often suffer from fatigue. Fortunately, these latter groups recover when given appropriate hormone replacements. Of course, depression and insomnia can also cause fatigue and effective treatment helps.
Finally, there is a third category of fatigue: chronic fatigue without a clear medical explanation. There are millions who now fall into this category, which has bedeviled both the people who have it and those who care for them. The amount of suffering for people with chronic, unexplained fatigue is vast. Inability to get out of bed or make it through a day is devastating, frustrating, and terrifying. People who fall into this abyss have often been extremely productive in work and life and have often been very active athletically. But those days are in the past.
Exhaustive searches for an underlying cause have led to a whole host of putative diagnoses to explain the chronic and often unremitting fatigue. Seeing a physician for chronic fatigue is often frustrating as doctors are trained to do a series of tests for the chronic disorders listed above and when those are normal, to have little to offer. Patients with chronic fatigue are told that they are depressed and treated with anti-depressants, but for many, this hasn’t helped.
Many chronic fatigue sufferers have turned to alternative or integrative practitioners for help. These physicians and other healers often make diagnoses of chronic Lyme disease, mild or sub-clinical thyroid and testosterone deficiency, chronic yeast overgrowth, food sensitivities (including gluten, dairy and other foods), residual fatigue from influenza and other infections, heavy metal toxicity, vitamin deficiencies and others. There are reports of individuals who have fully recovered from treatment of one or more of the above disorders. These successes are heartening, but there are still millions of chronic fatigue sufferers who have not responded to these alternative treatments.
The Institute of Medicine has recently published a report on chronic fatigue syndrome. They recommended that chronic fatigue be considered a real illness characterized by exercise intolerance, cognitive dysfunction, and sleep disturbances. They suggested that the disorder be known as systemic exertion intolerance disease. The report notes that approximately a million individuals are afflicted and that there is no known cause and no known cure. Most people with this disorder never return to full functioning. While many chronic fatigue sufferers have welcomed this classification, there are some problems with it. It is certainly validating to those afflicted as it does elevate the disorder to being a “real disease,” however there is still no clear explanation for the disorder. And more importantly, and more depressing, there are no new treatments. People with chronic fatigue are still left being sick and tired; and they are sick and tired of being sick and tired.
It is my opinion, and the opinion of a group of physicians and mental health professionals, that there is a reason for this suffering; and that there is an effective treatment option. When there is no clear medical reason for chronic fatigue, whether you call it chronic fatigue syndrome (CFS) or systemic exertion intolerance disease (SEID), it is likely that the symptoms are actually caused by the brain and that this is a reversible process rather than a structural disease of the body or of the brain. Most people (and most doctors) don’t really understand how this can happen, but our brains have tremendous power and can produce exactly this combination of symptoms. There is a tremendous inability to see or understand this point of view but before you get upset with me and stop reading, let me explain.
As I’ve described in previous blogs on this website, Dr. Tim Noakes, the exercise physiologist from South Africa, has demonstrated that the fatigue seen in marathon runners known as “hitting the wall” is not due to energy depletion, but due to processes within the brain. Dr. Noakes calls this the “central governor” function of the brain. By that he means that a part of the brain that warns us about impending danger acts to create fatigue. This fatigue is real, but is not due to a physical disorder. The brain functions as a “break” on the extreme amount of activity that occurs during a marathon or other extended activity. The brain recognizes that there is a danger in continuing to exert that activity and sends out a “danger” signal to warn us. The signal causes the sensation of fatigue and often muscle pain. However, the body’s energy reserves are not actually depleted. It is a signal like the light on a car’s gas gauge that lets us know that the car will eventually run out of gas, but isn’t on empty just yet. Elite athletes know how much energy they have left and simply continue to exercise, knowing that they are not actually in danger. They understand that the symptoms are caused by their brain.
Here is a quote from Noakes book, The Lore of Running:
This new understanding of fatigue brings together all the different models of exercise physiology. In fact, the findings of the separate models can all be explained by the action of a central governor that regulates exercise to ensure that internal body homeostasis is maintained and bodily damage avoided. Fatigue is merely the emotional expression of the subjective symptoms that develop as these subconscious controls wage a fierce battle with the conscious mind to ensure that the conscious ultimately submits to the superior will of the subconscious.
Another way to think about this is to understand the role of the brain in healing and recovery. When we are injured or develop an infection, the brain recognizes this and forces us into a rest and recovery situation. In other words, the brain causes fatigue (and also pain) to make sure that we rest (i.e., basically stay in bed) in order to recover. It is part of the built in design of the brain to be able to create these symptoms. They are adaptive, i.e., they help us recover. After the injury heals, the brain turns off the fatigue and we can resume normal activities.
However, in some people, the danger signal described by Noakes does not turn off and fatigue persists, even though the injury heals and the infection resolves. This is how chronic fatigue can occur and how it is a product of brain activation. This process is known as persistence quiescence and is described in an article by Gracely and Schweinhardt.
Read Michael’s story, below. It is typical of the stories of chronic fatigue that begin with an infection and just never resolve. That is, until Michael became aware that it was his brain that had taken over where the infection left off and was responsible for the chronic part of the chronic fatigue.
In 2005, I was in my senior year of college. I’ll never forget the day that I woke up with brutal flu-like symptoms. Unfortunately, after a few days spent recuperating in bed, the symptoms never vanished. Over the next few weeks, I had a host of blood tests that were negative for any abnormalities. I went to several doctors and I was told that I likely had a virus and that my symptom of severe fatigue would likely end within a few weeks. However, weeks became months, and the debilitating fatigue was unrelenting and got worse and worse. As the fatigue became incapacitating, I had to drop my courses for the semester. After 6 months of battling the illness and visiting numerous medical professionals, I was finally diagnosed with chronic fatigue syndrome (CFS). Over time, I began to suffer with pain, which also got worse and spread to my entire body; and became severe as well. Then I was diagnosed with fibromyalgia in addition to CFS. The pain and fatigue became so intense and unremitting that I was confined to my house, and I could barely walk from the bedroom to the bathroom. The symptoms were so severe that I had to be pushed in a wheelchair if I left my home.
Over the next two years, I visited several dozen medical professionals of various specializations and tried a wide range of interventions to try to get better. I didn’t want to give up and I felt that there must be an answer somewhere. I was treated with medications, physical therapy, alternative remedies and dietary modifications. On a few occasions, I seemed to feel a bit better for a few days, but sadly none of those interventions helped to improve my plight.
At that time, a friend of mine recommended that I read a book by Dr. John Sarno. A co-worker of my friend had amazingly cured his own fibromyalgia symptoms after using Dr. Sarno’s treatment approach. It was with excitement, but skepticism, that I read Dr. Sarno’s book, The Divided Mind. I found the book to be tremendously innovative, insightful, rational and lucid. I found myself reading about his concepts of TMS (Tension Myoneural Syndrome) with an open mind and a receptive heart. I acknowledged to myself that much of my personality paralleled that of the classic “TMS personality,” i.e., I tended to be conscientious, people pleasing, perfectionistic, and self-critical. With this new insight and self-awareness, I was eager to apply the TMS treatment protocol, which consisted of fully embracing the model that my symptoms are completely caused by my brain, eliminating fear of my symptoms, increasing physical activity despite the severe symptoms, journaling to reduce stress and express feelings, and finally let go of the illness that had plagued me for so long. This was very difficult and I had to push myself to stick with the progam. I needed reassurance and help from a friend who had also recovered from severe fatigue using this method. I spoke to him on the phone every day for continued reassurance and encouragement. And, I gradually began to see some progress. I began to feel better for a few moments. Bit by bit, these moments got longer. And in only three weeks after beginning to implement Dr. Sarno’s protocol, I was 100% free of all fatigue and pain and was able to resume my life. It was amazing! I had my life back.
Since that time, I have had the opportunity to share my knowledge of mind-body syndromes with others and assist them as well in healing from the numerous and diverse illnesses, pain and fatigue that they have suffered from.
It is likely that you will find this account not believable. There are several objections commonly voiced to the stories of miraculous cures that seem to be due to simply “thinking positively.”
You might think that symptoms that are so severe as to make someone homebound could not possibly to caused by the brain, in the absence of a true physical illness. You might be amused by the idea that an underlying personality style would have anything to do with chronic fatigue and pain. You might be annoyed or angry at a theory that suggests that you could just “push” your way through such severe symptoms, since you have already tried doing that. You might feel that stress couldn’t possibly do this. You might think that the infection that started the whole problem is still causing the problem, and that a change in attitude could not possibly make any difference in that. Finally, you might ask that if this syndrome (TMS) is so common and so curable, why don’t more people know about it? The vast majority of people with chronic fatigue syndrome and chronic pain are likely to believe all of these objections to Dr. Sarno’s approach. I don’t blame you one bit.
The idea that the brain is powerful enough to create such severe symptoms is simply not part of the common knowledge in our world. Doctors are not trained to understand the power of the brain. They do not look for the brain-body connection to understand symptoms that are not clearly caused by a disease process. Therefore, they never find it and tend to ridicule anyone who suggests that the brain is causing CFS, fibromyalgia, headaches, neck or back pain, irritable bowel or bladder syndrome and other disorders commonly classified as “medically unexplained symptoms.” I spoke to a physician who suffered with chronic pain and fatigue for several years. She works at a university medical center in a large city and saw all of the relevant medical specialists at her institution. None suggested the course of action that Michael took and that I recommend to my patients. After following the program in my book, Unlearn Your Pain, and seeking counseling for TMS, she has recovered fully. Since then, she has gone back to her physicians and while they are happy for her success, they have all shown disbelief, lack of interest, and even ridicule for this approach. And yet, she is not alone in being able to recover from chronic pain and fatigue.
There is a great stigma attached to the idea that physical symptoms can be caused by psychological reactions. We tend to belittle this idea because it seems as though it blames the person for the illness and makes it seem that the symptoms are not real, i.e., just something “made up” or “all in your head.” However, nothing could be further from the truth. The symptoms of CFS, fibromyalgia and other associated disorders are real, are not made up, and are not the fault of the sufferer. They are due to the incredible power of the brain to create and perpetuate real symptoms. The brain is programmed to respond to stress and the pressures that we put on ourselves by enforcing a rest and recovery mode that is very hard to understand and overcome. However, this is the truth for many people who continue to suffer.
It took several years for Michael to figure out that his fatigue and pain were not caused by a prolonged infection or by a physical disease process. When he fully embraced the idea that it was his brain and yet not his fault, he was able to face the symptoms and work through them. This is obviously not easy work. It takes courage, commitment, and strength. Michael also began to face some of the stressful situations that had occurred in his life and addressed them as best as he could. And this approach worked for Michael.
Would it work for others?
I have treated hundreds of people suffering with chronic fatigue and pain. The vast majority of them have had years of testing and diagnostic studies that have not demonstrated a clear cause for their symptoms. They have had treatments that ranged from traditional medical to holistic and alternative treatments without finding relief. And they have typically spent thousands of dollars, both through their medical insurance and out-of-pocket expenses. They have gone through the whole gamut of emotions: frustration, anger, guilt, grief, depression, fear, anxiety and often resignation that they will never get better. Their lives, which were once so vibrant and active, have been lost and almost forgotten. There are few things worse than this fate.
And yet, many of my patients, like Michael, have been able to recover. These recoveries are not always so rapid. Some people take months or even a year or two to recover, yet the key point I am making is this: There is a clear reason for the fatigue and other symptoms and there is a path to getting better.
Research on the function of the brain shows that the brain definitely has the ability to create real, physical symptoms. As this knowledge disseminates, there will be more people who recover from chronic fatigue and other associated chronic symptoms that have defied accurate diagnosis and effective treatment.
To your health,
Howard Schubiner, MD