“Just because you can’t measure it, doesn’t mean it doesn’t exist.” This was a tweet by the husband of a someone with fibromyalgia (FM). This tweet lit a fire under me. Fibromyalgia is a condition that many physicians believe is psychosomatic, in other words physical symptoms originating from mental or emotional causes. This widespread belief is also true of chronic fatigue syndrome (CFS). Why do we believe that these conditions are psychosomatic? Simply because there is no objective test that proves it exists? How narrow-minded are we? There was a time when we thought the world was flat, because we couldn’t prove otherwise.
Don’t get me wrong. I used to roll my eyes when a patient told me they had CFS or FM. I told my patients that there was nothing wrong with them when the limited panel of “knee-jerk” labs for work-up of fatigue and muscle pain were normal. Then I put them on an anti-depressant and gave them a referral to a therapist. What changed my mind? Two things: 1) seeing patients over and over who had a similar pattern of unexplained, devastating symptoms without any mental or emotional problems and 2) reading the book Osler’s Web, an 800+ page fascinating report about CFS and the doctors who were swallowed up into the labyrinth of searching for a cause. This book was recommended by a patient and forever changed my view of CFS, FM, and Multiple Sclerosis.
Do I know what causes CFS or FM? No, I don’t know the cause but I do know that it is real. I know that it is a dysfunction at a cellular level that affects every system of the body. I do know there are objective findings that have been ignored for decades by mainstream medicine. I do know that patients are devastatingly disabled and unable to work or participate in the lives of their friends and families. Being involved in these patient’s lives has given me a new appreciation for my health that I so often take for granted. And it has inspired me to look outside my scope of knowledge to find a way to help them, rather than turf them to the psychologist or specialist like I used to do. I now look for those objective findings and show them that they are not crazy. I experiment with different strategies to optimize their sleep, nutrition, hypothalamic-pituitary function, and energy levels. Are they cured? No, but if they improve, it is a win.
I believe that someday we will know the cause of CFS and FM, whether it is the XMRV retrovirus, mitochondrial dysfunction, a primary hypothalamic pituitary or some other cause. I believe that CFS, FM, and Multiple Sclerosis (MS) are all spectrums of the same disease process. MS is believable because there are objective findings. CFS and FM are not believable because there is not one specific, objective finding to explain the symptoms. They are invisible diseases. They are not believable because the symptoms are widespread and nonspecific. They are not believable because we don’t look beyond the scope of what we know to be true. And that is the error in our thinking.