What sounds more serious to you - chronic fatigue syndrome or myalgic encephalomyelitis? Most people would probably say myalgic encephalomyelitis (that is, if they could figure out how to pronounce it!) without realizing that CFS and ME are actually the same condition.
That's why a Name Change Advisory Board is working to get the official name changed to ME/CFS. They say it's more accurate from a diagnostic perspective, gives the illness more credibility and would help people with CFS escape the stigma of a misunderstood and grossly underestimated ailment. Perhaps most importantly, advocates hope the name change will help garner the attention and research dollars this disabling condition deserves.
You can learn more about the name change effort on a new website, aFairName.org. If you support the cause, you can sign a petition, voluneer to help and even get a reminder about an upcoming vote in May.
- Learn more about the name-change effort.
- Learn more about chronic fatigue syndrome.
- What's your opinion on the name change? Post a comment here or in About.com's Fibromyalgia and CFS forum.
- Get chronic fatigue syndrome information at Fibromyalgia & Chronic Fatigue Syndrome Resource.
Adrian,
The “A Fair Name Group” wants to change the name to Myalgic Ecephalopathy, a disease that does not exist, not Myalgic Ecephalomyelitis whch has been the name for more than 50 years and has a World Health Organization diagnostic code.
Jerry,
Actually, the group wants to use simple the acronym – ME/CFS – because there’s some dispute about whether myalgia encephalopathy or myalgia encephalomyeltitis would be more accurate. Both camps agree that using ME would bring more legitimacy and bring the U.S. in line with international health organizations.
Sorry about my typos above – I of course meant “myalgic,” not “myalgia.” Can you tell I type fibromyalgia a lot?
Adrienne,
The members of this group met at the last IACFS/ME conference in Florida.
Their consensus was to make the switch from CFS to Myalgic Encephalopathy.
That will be the next step. Just ME would not bring the U.S. in line with
international health organizations as there is no WHO coding for the acronym
ME. Just as there is no code for Myalgic Encephalopathy. However, there is,
and has been for decades, a code for Myalgic Encephalomyelitis. ME-itis, and
ME-itis only, will bring the U.S. in line with the rest of the world.
I am also concerned that your site uses the term “chronic fatigue” but you
are expounding on Chronic Fatigue Syndrome. There is a difference between
the two. Please do not use the terms interchangeably.
Thank you.
Jerry,
I’m concerned about the “chronic fatigue” heading on the site as well and have requested a change.
I realize that the original intent was to change it to encephalopathy, but the Name Change Advisory Board amended its recommendation and decided on ME/CFS because of disagreement over what the “E” should stand for. More information is here: http://www.immunesupport.com/library/showarticle.cfm/ID/8454.
Thanks for you comments!
The other day I was describing my illness and the moment I said the name, the woman laughed and said, “Oh, I think I have that all the time.” What a slap in the face, even after all these years of hearing it.
If cancer were called “bad creativity syndrome” or diabetes, “chronic thirst syndrome,” well, the world would be a different place.
I always liked the name Chronic Neuroendocrineimmunologic Syndrome. It’s descriptive and gives the impression of how many ways in which sufferers are affected.
Read my post on M.E. 101 on the forum in the General Discussion section. I just posted it a few days ago. Those are not my words, but the words of Mary Schweitzer, PhD, who has M.E. and has done well with Ampligen.
See her website:
http://www.cfids-me.org/marys/essays.html
Mary has done extensive research (she was a history professor prior to her illness), attends almost every CFSAC meeting, and is working on a book about M.E.
Personally, I’m OK with using ME to mean either the defined disorder of myalgic encephalomyelitis or encephalomyelopathy. I think research will help to further define these illnesses when our government quits playing games with our lives and gets down to serious neurobiological research.
The point is that M.E. was defined decades before CFS and that was very, very wrong to create a name that was a non-illness. We have all suffered from that gross mistake. Surely there are misdiagnoses. That happens all the time with every disease/disorder on the planet. But to come up with such an erroneous name was ludicrous. This must be rectified now and not quibbled over. The details can be worked out. The bottom line is that M.E. is already a defined disorder and is what most of us who were diagnosed erroneously with CFS have.
Granny (ME for 23 years)
Thanks all.
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