Friday, May 11, 2012

Tunnel vision in research trials.... 

Found this in the January newsletter for the CFIDS Association of America. Glad someone besides patients are paying attention to the full story in these trials:

Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

The problem with these trials is that physicians just see the data in favor of the therapies and wrongly conclude that they are going to work for every patient, or even that they constitute a cure. Exercise should only be done TO TOLERANCE, and for the severely ill, that tolerance might be limited to stretching in bed, or maybe just the exertion of eating solid food. I have been exercising pretty consistently up to six days a week for the past four years, starting with only five minutes on the Gazelle glider on Tuesdays, Thursdays and Saturdays and then mostly stretching in the pool on Mondays, Wednesdays and Fridays. I am up to 28 minutes on the Gazelle, but I still absolutely cannot tolerate raising my heart rate above 90 beats per minute. And I still cannot do impact exercise, or even walk more than two city blocks without rest.

My problem with cognitive behavioral therapy is the notion that ME is a somatoform disorder that can be cured by a shrink. I have found voluntary talk therapy to be useful in coping with chronic illness, but ONLY after it was established that I have a genuine physical illness and that any accompanying depression is situational, not the CAUSE of my physical illness. I have not needed to see a mental health professional since 2006 and do not anticipate needing one in the future unless something truly traumatic comes up like an unexpected death in the family, something for which just about any mentally healthy person would need temporary counseling.

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