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Will Chronic Fatigue Syndrome Ever Get A Name Change? “The Campaign for a Fair Name for CFS”

Posted Apr 11 2009 1:01am 4 Comments

 

My fears picture at My fears

A Name Change For Chronic Fatigue Syndrome — Will It Ever Happen? — by Catherine Morgan

According to published research, CFS patients and researchers alike feel that the present name trivializes the serious nature of the disease by labeling it “fatigue” - a symptom that is shared by almost everyone at some point in their life. — read full article

As a person diagnosed with CFS, the name has been devastating in almost as many ways as the disease itself has. Not only do most regular people think it is a name for someone who is no different than they are (as “everyone” has fatigue), but my experience has been that most doctors do not even except CFS as a “real” diagnosis. Hence, the need for a more respectable and acceptable name for this devastating disease.

Read the rest of this entry »

 

My fears picture at My fears

A Name Change For Chronic Fatigue Syndrome — Will It Ever Happen? — by Catherine Morgan

According to published research, CFS patients and researchers alike feel that the present name trivializes the serious nature of the disease by labeling it “fatigue” - a symptom that is shared by almost everyone at some point in their life. — read full article

As a person diagnosed with CFS, the name has been devastating in almost as many ways as the disease itself has. Not only do most regular people think it is a name for someone who is no different than they are (as “everyone” has fatigue), but my experience has been that most doctors do not even except CFS as a “real” diagnosis. Hence, the need for a more respectable and acceptable name for this devastating disease.

Read the rest of this entry »

Comments (4)
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yes. actually, it HAS passed now (the throat part) but it was continuous I think for nearly 2 years though worse some days than others.. 
Sorry I meant to reply to the person above but thank u for campaigning on our behalf for a name change. What about Immune Dysfunction Syndrome and just drop the fatigue part? What can we do?

Most people these days are called it CFS-ME or ME-CFS.  ME stands for myalgic encephalomyelitis.  The Canadian definition of ME matches most closely the symptoms many of us experience.  I told the ER doc I had ME and he got angry because he'd never heard of it.  But it is real, and it has been defined long before the CDC ever gave our illness the trivial name CFS.

P.A.N.D.O.R.A. also popularizes the concept of an NEID, linking us with Lyme, Gulf War, Autism, and Fibromyalgia, as we have overlapping symptoms.  This is probably a good idea as focus on neural plus endocrine plus immune dysfunction will get us closer to treatment solutions. 

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