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Letters From Our Readers - Thoughts on the CFS Name Change Campaign 12/13/06

  [ 288 votes ]   [ 1 Comment ]
www.ProHealth.com • December 13, 2006


A "Heart Attack of the Central Nervous System"

Someone who really knows everything that there is to know about CFIDS told me that she feels like her central nervous system had a heart attack. I feel like mine did the same, but it feels like all the tires on this 18-wheeler blew out at the same time and there aren't any replacements. – dem2008

_____________________

Let's Just Name it Quickly!

This has been going on for so long! M.E. [myalgic encephalomyelitis] …would work for me. Let's just change it ASAP!!!! It's really important, I think! - Helene

_____________________

CFS Should be Considered a Symptom

From what I'm learning. CFS is a symptom. It isn't the problem. Doctors, biologists, and such should be encouraged to find the problem that caused the symptom…In Engineering we call it Root Cause Analysis. Takes lots of time and investigation. – allwxrider

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Consistency is Important

It is very difficult to rename, and I don't know why the CDC is wasting all this valuable money in a PR campaign with an impending name change coming soon. Once again, mismanagement and lack of thought with money. However, the most logical name would be M.E. to keep it uniform with Canada, Australia, England, and WHO. Any time you brand a name, it is very important for consistency. Also, this way researchers and patients are all on the same page. – wrthster

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M.E. in the U.K

…In regard to M.E as a suitable name – Yes, we have M.E here, which is widely used and widely ridiculed! M.E was called the "yuppie flu" in the 1980's as every burnt out city worker claimed they had it and I'm sure many did. I would never tell anyone that I had M.E because of this stigma attached to it. As everyone has said, CFS does get a "yes I'm tired too" response. Fibromyalgia gets a better response but no better understanding.

Sorry to…be negative but I needed to explain that M.E is considered a bit of a joke over here! – Diva55

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Fatigue is More Than Being Tired

I agree we should have a better name for this because I am tired of people asking me what I have been doing and I would say “sleeping a lot” because the Fatigue hit me. And they say, “I know just what you mean. I get so fatigued too. I wish I were able to stay in bed most of the day.” They are confusing Fatigue with being tired. They really don't know what Fatigue is! We do. – Nancy




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name change
Posted by: minh98
Dec 13, 2006
I am a physician with cfs. I agree with one of the comments posted previously. let's be consistent with other countries and stick to M.E. (myalgia encephalomyelitis). If it needs to be changed in this country, then PFS (Post-viral Fatigue Syndrome) is very accurate and easy to say (has the same rhyme with CFS but without the negative connotation). Whatever it is, let's get the name changed and move on to the more important things such as more research and ultimately better treatment and perhaps a cure some day. Thank you.
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