CHAOSTOCOSMOS

Tuesday, 17 February 2015

How disease names can stigmatize

On 10 February 2015, the long awaited report from the Institute of Medicine (IOM) was released regarding a new name — Systemic Exertion Intolerance Disease — and case definition for chronic fatigue syndrome (CFS). Because I was quoted regarding this report in a New York Times article, in part due to having worked on these issues for many years, hundreds of patients contacted me over the next few days.

The reaction from patients was mixed at best, and some of the critical comments include:

  • “This new name is an abomination!”
  • “Absolutely outrageous and intolerable!”
  • “I find it highly offensive and misleading.”
  • “It is pathetic, degrading and demeaning.”
  • “It is the equivalent of calling Parkinson’s Disease: Systemic Shaking Intolerance Disease.”
  • “(It) is a clear invitation to the prejudiced and ignorant to assume ‘wimps’ and ‘lazy bums.’”
  • “The word ‘exertion,’ to most people, means something substantial, like lifting something very heavy or running a marathon – not something trivial, like lifting a fork to your mouth or making your way across the hall to the bathroom. Since avoiding substantial exertion is not very difficult, the likelihood that people who are not already knowledgeable will underestimate the challenges of having this disease based on this name seems to me extremely high.”

ME/CFS, disease names, and patient stigmatization | OUPblog

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