Selected Letters on the Name Change: CFS Newsletter September 20, 2006

In Favor of ME

There is no need to think up yet another name for the disease currently miscalled “Chronic Fatigue Syndrome.” There are already too many names. The name CFS was only coined at the time of the Lake Tahoe epidemic, because the members of the CDC who were studying the epidemic ignored all the peer reviewed literature on previous epidemics of this disease. This literature contained many previous descriptions of a disease which was identical to the outbreak of the disease found in the Lake Tahoe area.

The name used in most of the peer reviewed literature was Myalgic Encephalomyelitis or ME. We should go back to using that name. We can then access (from our medical libraries around the world) a great deal of information, which has been forgotten about this disease.

The name Myalgic Encephalomyelitis may not be a perfect description of the disease, because we don't know the cause. However, other names of other diseases are also not perfect descriptions, but everyone knows what the disease is. For instance, we all think that we know what malaria is, even though we know that malaria is not due to "bad air," which is the translation of the word malaria.

To change the name of a disease back to what it was previously, it would be necessary for the peer reviewed medical journals to require that articles about the disease be written using the old name. I would also recommend that the double name ME/CFS not be used, even for an interim period, because it might persist.

Yours, hoping for an older, better name – Dr. Rosemary Underhill [consultant to and board member of the New Jersey CFS Association]


On the light side

Great project, but I fell asleep while….. – Edward


The mother of “Chronic Shakiness Syndrome”

Couldn't help but smile and feel a small sense of "accomplishment" (hard to come by these days when one is on disability) when the latest ProHealth newsletter brought my letter to everyone's attention. The one that compared the name “Chronic Fatigue Syndrome” to using "Chronic Shakiness Syndrome" to refer to Parkinson’s, and "Chronic Forgetfulness Syndrome" to refer to Alzheimer’s.

I thought I should let you know that everyone who knows me (I mean everyone, including my multitude of doctors!) knows that I use that comparison all the time, and e-mailed me saying they had a feeling that the letter mentioned had to be mine. I use humor to get me through the days. It works quite well….

To better health! – Leeza Behar (I don’t mind your using my name. Who knows, it might…increase my T cell count!)


CFS an open invitation to contempt

I have always (for the 20 years I have had this disease) thought the name was of critical importance. It is, as [Berkeley linguistics professor] George Lakoff would argue, a question of framing. People's perceptions of what this illness is like depend largely on the name. The name “Chronic Fatigue Syndrome” is nothing other than an open invitation to exactly the contempt that is often directed at us.

I would like to ask this of people who argue that the cause of the disease has to be known before it can be re-named: Do we know the causes of all cancers? Or of rheumatoid arthritis? Or of ALS? I'm not a medical person, but I am sure that anyone who is could quickly list diseases whose causes are mysterious and complex, but have for decades – or longer – been accepted as serious illnesses.

My vote: Call it Myalgic Encephalomyelitis. Every year there is more peer-reviewed research documenting the pathophysiology of CFS, justifying the name that Melvin Ramsay argued for years ago. [The late Dr. Ramsay coined the word “Myalgic Encephalomyelitis,” first used in the medical journal Lancet in 1956.] If not that, call it Ramsay's Disease, or [CFS pioneer Dr. Paul] Cheney's Disease. There's a lot to be said for those old-fashioned names. So glad you've decided to take up this cause. – Amy


Anything without “chronic” or “fatigue” or “syndrome”

I tried to get this process started months ago with a meeting at our HHV-6A conference in Barcelona [April 30-May 4, 2006, which included a workshop on viral role in CFS]. No one has been able to agree but I like “viral neuro-immune disorder,” or to name it for a person who has worked in the field for years. Actually, ME is a very accurate description, but viral encephalomyelitis works too. Anything without “chronic” or “fatigue” or “syndrome.”

Thanks for taking this on – Annette Whittemore [President, Board of Directors HHV-6 Foundation]


“Chronically lazy”

My father suffers from CFS and I find myself trying not to tell others what he suffers from. My father was a very successful outgoing man who is completely disabled from CFS. I have already heard remarks like "so your dad is chronically lazy," which I find appalling, and I am not the one who is suffering. So please just let me know what I can do and I promise you I will do it. – Jessica

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