"Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds," read the headline in the February 17, 2011 edition of The New York Times. Within a few days Chronic Fatigue Syndrome (CFS) ranked third on Yahoo's 'Trending Now' list. For the misinformed reader it's likely these headlines translated that CFS is all in your head.
Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure.
I've now decided to come out of the closest -- so to speak -- because it's ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it -- and there are many more who have it than let on -- the better off we all will be in the end.
When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.
That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.
And this brings me back to the latest round of articles and speculation about CFS in the news. It was all triggered by a rigorous study exploring treatment options for CFS in Britain published in the prestigious medical journal, The Lancet. At first glance the headlines suggested CFS is best treated with psychotherapy -- a not so subtle conclusion that it's all a psychological condition. Upon closer inspection, however, the study itself says no such thing. It states quite openly that CFS, or Myalgic Encephalomyelitis (M.E.) as it is called in the U.K., is a syndrome of various debilitating physical dysfunctions. The thrust of the article is that CFS is best treated by a combination of medicinal intervention, exercise, and Cognitive Behavioral Therapy (CBT). CBT is intended to help the patient deal with the ugly reality that they will never get better, that they are forever changed, and that the old you is gone and the new 'CFS you' needs to be embraced. The theory is from this acceptance and surrender peace will be your reward.
And therein is the rub. I have no problem with CBT as part of overall treatment for CFS. I'm still fighting to get better and am not yet ready to surrender to a life where I spend 20 hours a day horizontal, lack the physical energy to sleep with my wife, and hold my new baby girl for more than a minute. But I have actively sought out CBT treatments, and all other forms of psychotherapy. Anything to help is my motto, from exotic herbs to the couch. And this openness to CBT is one I'm sure is shared by many with CFS.
The problem is good luck finding a psychiatrist or therapist who has ever worked with someone with CFS, or even knows the symptom profile. I've seen four therapists to find an outlet for my frustrations. Instead, I have found each time a good-natured, well-intended professional who -- when I tell them my textbook symptoms of CFS -- only shake their heads and say, I never heard of that. It must be awful. Thereafter I spend my money and more importantly my precious energy stores educating them on CFS while they in turn struggle to fit me into a paradigm of psychological dysfunction. In the end the only help I've ever received from a therapist, or non-CFS specialist doctor for that matter, was to seek one who has a loved one who suffers from CFS. It seems in this era only they know the devastating truth and take you at your word that you're sick, not sick in the head, which for me is the best therapy I know of right now.