Wednesday, January 30, 2008

What's in a Name?

Posted to the Campaign For a Fair Name Message Board

Before we do something we might regret shouldn't all the facts be on the
table?  Its called informed consent, but we are not being fully informed.  All
the facts are being hidden just as they were when CFS was invented to hide
"the awful truth" about Myalgic Encephalomyelitis.  The name change advisory
board says that the acronym "ME/CFS" is a "medically correct" name to replace
CFS, but it will still have a false CFS fatigue definition distorting
research, and the demeaning CFS will still be part of the name?  How could
anyone believe this unimaginative hype that CFS will disappear when it is
clearly part of the acronym/name?

Don't be fooled again.  If you rename this disease - again - and believe that
the acronym ME/CFS is going to make CFS go away you may not like the
consequences.  People will ask what does ME/CFS stand for and you will have to
answer with nine words and then explain some more:  Myalgic Encephalomyelitis
or Myalgic Encephalopathy and Chronic Fatigue Syndrome.  Three names for the
disease and you supposedly get to choose whether you call it Encephalomyelitis
or Encephalopathy, its either one or the other.  How does that clear up the
confusion? Whatever you "choose" you will still have to keep on saying the F
word, so it seems CFS is not going away.

Some argue that Myalgic Encephalomyelitis is a difficult name to pronounce,
but if you look in a medical textbook you will find many extraordinary and
complicated terms and that certainly is not a reason to reject the name of
this disease.  If you can say polio-my-el-itis then you can say
encephalo-my-el-itis - a learning method that you get taught in your first
years at school.

The name affects everyone around the world so why is the decision to rename
the disease once again in the hands of a select group of Americans?  Where are
the international M.E. experts, particularly the ones who examined Myalgic
Encephalomyelitis patients long before the terrible CFS name change?  What
about Ramsay's 1986 definition or Hyde's 2006 definition?  What about the WHO
classifying M.E. as a neurological disease way back in 1969?  What about the
history of epidemics dating back to 1934?  Sadly what about the autopsies?
Shouldn't we be discussing these terribly important facts?

Isn't it crucial to discuss the history of the epidemics and the knowledge that Myalgic Encephalomyelitis is a very similar disease to Polio, that it was formerly called Atypical Poliomyelitis until they found that it was caused by other enteroviruses and not polio enteroviruses?  Or that it is a very similar disease to Post-Polio Syndrome, a neurological disease placed correctly at the NINDS?  Why isn't Myalgic Encephalomyelitis placed correctly at the NINDS?
No, the CDC prefers to call it CFS, states there are no tests or treatments and hides it at the Office of Women's Health, adding further insult to all the males who suffer from M.E.

Multiple Sclerosis was called Hysterical Paralysis or Fakers Disease when they
did not know how to diagnose it and M.S. sufferers were not believed just as
we are not believed, but in the 1950s a diagnostic test was found and the
original name, described by a famous physician Charcot in 1860 was restored,
and now everyone knows how serious this disease is.  Most people think that we
are faking it too when they hear CFS.  It's almost the same story but the
major difference is that we had diagnostic tests including MRIs, viral and
immune tests, and M.E. experts saying it was Myalgic Encephalomyelitis back in
the 80s.  They knew what it was yet they ignored all the evidence, changed it
to CFS and created a new definition.

This is the critical point - there was no need to change the name at all.

The scientific evidence for inflammation keeps mounting up and proving that
the original name was right, so why aren't we simply discussing going back to
the historically and medically correct name?  Don't you think it is time that
all these questions and facts were discussed openly, and that patients and
M.E. experts from all over the world - not just a small group of American
experts - are rightly consulted about restoring Myalgic Encephalomyelitis and
ensuring that the CDC acts fairly and places M.E. at the NINDS?

It is the only fair thing to do, in a "fair campaign".

What is going to help us the most, another confusing name change or the truth
about Myalgic Encephalomyelitis, the diagnostic tests, the known viral and
toxin causation and the real possibility that researchers could have
discovered a treatment by now if they had adequate funding?  If only we hadn't
wasted the last 20 years on CFS and all those made-up fatigue definitions and
the useless studies on fatigue.  M.E. patients not only suffer severe illness
and pain, they have been unnecessarily traumatised with disbelief, neglect,
abuse, poverty, isolation, loss of family and friends.  This has to stop.

Please stop and think before you get caught up supporting this mess and then
you won't have to complain later on that another wrongful name change did not
change anything at all and that the psyches are still getting paid millions to
provide Character Breaking Treatment and Gratuitous Exercise Torture while
biomedical research is starved.  Stop the madness!  Speak up!  Don't let them
get another dollar that should go to urgently needed research and support!

John Anderson

Permission to repost

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