As a person living for years with a chronic undiagnosed health disorder I encountered many myths and misconceptions about health and illness. The first is the view shared by the majority of mainstream physicians that if the diagnosis of a particular health condition cannot be determined by medical tests and evaluation then the cause must be psychosomatic in other words originating from mental or emotional factors. I think nearly every person with Chronic Fatigue and Fibromyalgia Syndromes has experienced a physician who made this assessment about them. The patient presents a diverse set of symptoms and complaints including things like fatigue, insomnia, headaches, muscle pain and cognitive problems for which there is no definitive diagnosis so he or she is either a hypochondriac or suffering from stress. This happened to me in 1973 when at the age of nineteen I became debilitated with fatigue and headaches. After extensive medical tests failed to find the cause my doctors reached the conclusion that my symptoms were due to the stress of being a college student. Although I was sure this was not the case it was a traumatic experience for me to continually assert my position. For some reason it is difficult for doctors to admit the limitations of their knowledge and profession. Instead of simply stating that they do not know what is wrong with a patient or that they cannot help them, they conclude or infer that the cause of the patients’ complaints is psychological even though they have no evidence that this it the case. This is a default opinion that shifts the blame onto the patients and is extremely invalidating.
Another major misconception about health is the view that a patient’s attitude can affect the physical outcome of a treatment. I have pursued dozens of therapies and treatments in my quest for resolving my health problems the majority of which were not effective. (See my post “What Didn’t Work” http://fibrofriends.typepad.com/fibro_friends/2009/07/what-didnt-work.html ). I approached each treatment with optimism and hope. The breakthrough treatments that worked for me (Wilson’s Syndrome protocol, Oral Systemic Balance, LENS neurofeedback and SIBO treatments) did so because they specifically addressed the cause of my health problems. Their success was based on the efficacy of the treatment and the skill of the practitioner facilitating that treatment, not my attitude.
The “placebo effect” is another area of medicine surrounded in myths and misconceptions. A placebo is a substance (sometimes referred to as a sugar or dummy pill) or procedure that is objectively without specific activity for the condition treated. When given to a patient who is told it will improve his or her condition and the patient’s condition improves the response is attributed to the patient’s belief or expectations of getting better. Skeptics and many mainstream health professionals attribute the results of alternative medicine including acupuncture and chiropractic to the placebo effect. Since the underlying mechanisms for which many alternative health treatments work are not fully understood it is easy to dismiss their validity with this argument.
The placebo effect began in 1955 after an anesthesiologist named Henry Beecher wrote a paper called “The Powerful Placebo” that tried to explain the fact that in his clinical trials some patients got well when given a dummy pill or sham treatment. Beecher’s methodology would not be accepted today but since that time there have been plenty of studies that corroborate his theory. The placebo effect however remains controversial and was challenged in a systematic review of clinical trials in 2001 by two Danish researchers who showed no evidence that it exists. Other factors that could explain a patient’s improvement from a placebo include the body’s innate ability to heal itself and the natural fluctuation of symptoms. The placebo effect seems to be observed predominately in relieving subjective conditions such as pain, anxiety, depression and sexual dysfunction.
A study published in the March-April 2005 issue of Psychosomatic Medicine found that patients with Chronic Fatigue Syndrome respond at a lower rate to placebos than patients with other diseases. The researchers led by Dr. Hyong Jin Cho a professor of psychiatry at King’s College London found the results disappointing and unexpected because they suspected that the symptoms of chronic fatigue syndrome were at least partly attributable to psychosomatic causes. Whatever one thinks about the placebo effect, this study helps dispel a common myth about the disease’s origin.
Another myth that continues to be perpetuated about Chronic Fatigue Syndrome and Fibromyalgia is that these conditions are most common in "type A" high achieving, driven persons. The truth is that CFS and FMS sometimes referred to as "invisible illnesses" occur across all segments of the population and all personality types. However it takes a person with very high self esteem and integrity to continually assert themselves in an environment where medical professionals dismiss their symptoms or label them psychosomatic. So although it may appear that CFS and FMS are more common in high achieving persons, this observation is skewed by the fact that these individuals are the most likely to persist in their assertion that they are indeed ill and have a greater ability to bring their conditions to the attention of the medical establishment and the public at large.
The idea that a person’s mind or attitude can cure or affect the outcome of a disease is not in my opinion or experience true. Anyone suffering from a serious illness such as diabetes, cancer, AIDS or chronic fatigue syndrome understands first hand the flawed logic and naiveté of this point of view. This is not to say that stress management and relaxation techniques aren’t effective tools in coping with chronic illness. I have benefited greatly from biofeedback skills, meditation and exercise as a means of mediating the stress I was under physically. However these tools did not cure me of my condition.
It is true that strong emotions trigger physiological responses in the human body both positive and negative. As a musician I have personal experience with both performance anxiety as well as “peak experiences” when the music transcended to a higher level. In both cases I felt that my illness was temporarily suspended or overwhelmed by the physical effects of my emotions. However once the event was over and I returned to my relaxed “normal” state, the symptoms of my illness returned. Hypothetically I can see how a patient who is listened to, comforted and cared for will feel more relaxed which would provide an optimal situation for healing. This however is not true for Chronic Fatigue and Fibromyalgia Syndromes, which are serious systemic diseases that can only improve with treatments that specifically address their causes.
What is particularly frustrating for CFS/FMS patients is how completely unrelated their moods and mental states can be to their physical state. I experienced countless days when I felt peaceful and optimistic that were followed by nights of hell. Likewise I experienced stressful times in my personal life that coincided with periods of better health and sleep. For me living with Chronic Fatigue Syndrome was an experience of living mind “over” body. It was discouraging and exhausting dealing with the fluctuating symptoms of fatigue, pain and insomnia yet I made a point of keeping a good attitude. When I felt like I was losing hope I leaned on friends and family. My best strategy of coping was to accomplish positive things even if they were small every day and to continue to look forward. Fortunately I recovered but that was not the result of my positive attitude. It was the result of my tenacity and ability to explore treatments that might improve my health and ultimately stumbling upon those that did.
It is appealing to think that the mind can control symptoms and disease. People want to believe this because it gives them a sense of control and security. But this attitude is a grave disservice to those suffering from serious illness and it hampers the search for their causes as well as finding effective treatments.
P.S. An important book published just recently on this subject is “Bright-Sided, How the Relentless Promotion of Positive Thinking Has Undermined America” by Barbara Ehrenreich.
In an New York Times article Richard Sykes, a British social worker who has studied the physical and mental sides of CFS says: "There is an immense hostility (among CFS patient groups) of psychiatrists because they have got CFS wrong for such a long time. At first they thought it was hysteria. Then they said it was depression. But the absence of a medical explanation is not a good reason for saying it's a psychiatric illness."[1]
Dr. Mark Pimentel, director of gastrointestinal motility program at Cedars-Sinai Medical Center" and leading researcher of Irritable Bowel Syndrome as well as its link to Fibromylagia Syndrome says: "The medical community has a history of considering stress to be a possible factor in poorly understood conditions that are later deemed to have more practical causes. Stress and psychological factors are definitive modifiers of human disease but they do not the cause or effect all human disease."
[1] When Philosophy Meets Psychiatry". D.D. Guttenplan. The New York Times. August 11, 2013
[2] A New IBS Solution". Mark Pimental. Health Point Press. 2006.