What's in a name? A lot, as those of us saddled with the moniker Chronic Fatigue Syndrome have learned the hard way.
As you've probably heard, a new name has been proposed in the U.S. by an expert committee at IOM, established by HHS: Systemic Exertion Intolerance Disease (SEID). Not everyone is thrilled with the proposed new name, though.
Now, you have a chance for your voice to be heard. Two different organizations are conducting simple surveys on the name so you can vote on which name you prefer and why.
The ProHealth website has a very brief survey - just 3 questions - on the proposed name change.
Paradigm Change has a similar survey with a few more questions on the proposed name change.
Each survey only takes about 5 minutes (or less), so take both!
Both surveys have questions about what name you would choose. Not happy with the current options but not sure what to suggest? My top choice is Neuro Endocrine Immune Disease - it gets at the heart of our illness and lets doctors know exactly what is wrong with our systems (basically, just about everything). NEID was talked about over the past couple of years (I didn't come up with it!), so I was surprised when it wasn't mentioned during all these naming discussions.
Click the links and take a moment to let your voice be heard! You CAN make a difference!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
1 comment:
Neuro Endocrine Immune Disease is self explanatory and every doctor should understand the severity of a multi system disease like this. Thanks for the surveys. I can't get passed the word "exertion" in the proposed name. It sounds like we're unable to tolerate being overly exerted. When reality is many can barely tolerated ADLS.
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