Tuesday, August 23, 2011

ME/CFS: What's the deal with the many names?

ME/CFS has many names.  It goes by: ME/CFS, Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-Viral Fatigue Syndrome (PVFS), and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).  Where did they get all these names, and how is each name different from the other?

Chronic Fatigue Syndrome (CFS) is has been used since 1987.  Most people in the USA still call ME/CFS Chronic Fatigue Syndrome.  CFS was first associated with chronic active Epstein-Barr virus infection.  It was later found that not all cases of CFS were associated with the Epstein-Barr virus, and that the cause of CFS was actually unknown.  Many people do not like the term CFS because it trivializes what a ME/CFS patient goes through.  When someone says they have Chronic Fatigue Syndrome, most people think "Well, I've been tired before, too, and I didn't go to the doctor for it."  They don't realize the difference between a well person being tired and someone with ME/CFS being extremely fatigued.  In my opinion they are in two different worlds, and can barely even be compared.  Even having fibromyalgia and EDS, I still never understood what the fatigue of ME/CFS was like.  When I developed ME/CFS I learned what real fatigue is. ME/CFS fatigue means sometimes I don't have the energy to roll over in bed, even if my face is stuck into the pillow and my neck in a twisted position.  Fatigue is just as debilitating as pain.  There are times I can't walk to the bathroom from the fatigue, and instead I have to slowly crawl.  Exercising is supposed to be good for you, but it just wears you out for days every time when you have ME/CFS.  I flare with fibro or ME/CFS (sometimes both) when I do too much.  ME/CFS is a lot more than just being tired, and that's what people think when they hear Chronic Fatigue Syndrome.

Myalgic (my-Al-jik) Encephalomyelitis (en-SEF-uh-lo-MY-uh-LY-tis) (ME) is the term used in the UK.  It means "inflammation of the brain and spinal cord with muscle pain."  It is a controversial name, as ME has not been associated with pathology of muscles or Central Nervous System (CNS).  I know there are a lot to remember as far as abbreviations go.  I'm trying to make it as straightforward as possible.  Some doctors and researchers say that ME is a better name than CFS because it concentrates on more than just the fatigue.  UK researchers say that ME is a lot more serious than just fatigue.  Some people prefer to call ME myalgic encephalopathy (en-CEF-uh-LOP-uh-thee), because it does not imply inflammation.  Many doctors and patients in the UK are okay with calling it ME/CFS, but not CFS/ME.  They say that CFS/ME puts too much emphasis on fatigue, when, again, researchers say ME/CFS is a lot more than just debilitating fatigue.  The way they look at ME/CFS  in the UK is different than the way they look at in the USA.  In the USA we concentrate a lot more on the fatigue of ME/CFS, while in the UK they try to look at the whole package.

Post-Viral Fatigue Syndrome (PVFS) This is the name the World Health Organization uses.  It isn't technically correct, in my opinion, because not all ME/CFS cases occur after a viral infection.  Mine did, but there are plenty of other cases that don't.

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) isn't a very popular name, but it is used some in the USA.  The Chronic Fatigue Immune Dysfunction Syndrome Association of America (CFIDS Association of America) uses this term.  They use this term because their research, advocacy, and awareness campaigns all revolve around the immune dysfunction side of ME/CFS because they see that as the root problem of ME/CFS.

The system of naming things is called nomenclature.  There are a lot of names for ME/CFS.  Here in the USA there is a push to make ME/CFS the official name, instead of Chronic Fatigue Syndrome.  What do you think?  Do you agree that ME/CFS is the best name?  Do you like another name better?

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