An attempt was made to clear up this kind of confusion with the article "Myalgic Encephalomyelitis: International Consensus Criteria". You can find it at:

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

The problem with the CFS name is that the CDC and others have succeeded in broadening the criteria for diagnosing it to the point where patients with no physical symptoms at all can be included as CFS patients. One can only assume that this is based on the highly questionable theory that our illness is a mental disorder rather than a physical illness.

I would like to stop using the name chronic fatigue syndrome altogether, but this confuses people who are less knowledgeable about things and don't know what ME is...so I just call it ME/CFS.

I don't mean to sound critical of those who are less well-read than I am...many of us were diagnosed by doctors who only know the illness by the name CFS. So it's understandable that the use of the name myalgic encephalomyelitis would confuse people.

We need more education of the public and we need to retire the CFS label...which I think was a mistake from the first day it was used.

Very interesting article, Richie. Thanks.

Hi like Richie I call it ME/CFS too......yes definitely the CFS title needs to be retired as it hardly touches on the complexities of the ilness..

hugz J

I've been weighing whether or not to call it ME/CFS since most folks, really have no idea, think it's merely some depression issue (see: caused by depression). It's encouraging to find others using that tag.

Along the lines of the debate between the difference, I found this recently...

http://www.name-us.org/DefintionsPages/DefOverview.htm

Shows what I know...I thought ME was what they called in England and other countries and we are forced by the CDC to call it CFS. There is a movement to have it called CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome. But that confuses things. My new doctor asked me if CFS and CFIDS were related. She said they were both written in my chart. I said CFIDS is what some people want to call it but for now it's CFS.
If we are concerned about name recognition, we should all use the same name. And like it or not, the CDC says it's CFS.

I would really like to see everyone using the same name, Vicki. But with the CDC now including people who have no physical symptoms at all, I can't really see how they have any relevance to this issue.

Most of the world, and more importantly the key researchers who are investigating the illness call it myalgic encephalomyelitis. I'm with them.

But I'll include the acronym CFS when I talk about it in posts...seems like that would include everyone no matter what their view on this issue...agreed?

ME/CFS has been used in Canada for some time now. They have clinics there to treat ME/CFS patients...makes the CDC look really backward and out of touch, it seems to me. Where are the US clinics?

per Leonard Jason PhD: "The term Myalgic Encephalomyelitis (ME) had been used prior to the term CFS (Acheson, 1959). ME was first described in literature of the 1930s, where an outbreak of Epidemic Neuromysthenia in Los Angeles County was called atypical poliomyelitis because of its resemblance to polio (Gilliam, 1938; Hyde, 2007).

Then, an anonymous editorial of a1956 issue of the Lancet coined the term benign ME (Anonymous Editorial, 1956). It was called benign because the illness did not lead to death of the patient. Later, Ramsay (1988) published a definition of this disease using the term Myalgic Encephalomyelitis (ME) and the term benign was dropped due to the seriousness of the disability created by the illness (Hyde, Goldstein, & Levine, 1992).

The first U.S. chronic fatigue syndrome (CFS) case definition was proposed by Holmes et al. (1988) through the auspices of the Centers for Disease Control."

The biopolitical debate has polarized both patients and researchers.

The issue with many critics is the timing of the phasing out of the umbrella term CFS not whether or not it is "real," but there are others who have a different point of view. The disease is real even if you call it mashed potatoes and gravy. The key may be education.

As well, most insurance coding in the U.S. is currently set for CFS and many doctors are unfamiliar with the differences and the differing criteria. And WHO ICD coding also varies.

As well, much of the research uses the term CFS regardless of the definition used or the disease referred to. It will take time to sort it all out in a way that does cause further confusion.

In Australia our national organisation ( non profit ) information and advocacy group refer to it as ME-CFS.....

Thanks for that link Richie
hugz julie

I meant to say the group is actually called

ME-CFS