Why not just call it M.E.?

This commentary represents the opinion of the author, who is the editor of The CFIDS Chronicle. It does not necessarily reflect the opinions of his fellow staff members or members of the Board of Directors of the Association. Other points of view are always welcome, particularly on this challenging issue.

by David Hoh

The simplest solution to getting rid of the name "chronic fatigue syndrome" quickly would seem to be to adopt the name that has been in use for many years in England and many other countries around the world: myalgic encephalomyelitis, or M.E.

Myalgic means muscle pain; the rest of the name refers to the brain. Encephalomyelitis means an acute inflammation of the brain and spinal cord. However, since science has proven that most patients with this illness do not have such inflammation, many advocates, especially in the United States, are pushing myalgic encephalopathy as an alternative. That generalizes the name to mean any disease of the brain, and these advocates argue the symptoms of brain fog and neurological dysfunction make that assumption obvious.

Some patient organizations and authors have already adopted a combination name-CFS/M.E.

So why not do it? Why not just adopt M.E. as the new name and be done with it?

It's not that simple. While myalgic encephalopathy might prove ultimately to be the best name for this illness, right now M.E. and CFS are different-by definition. Until we deal with the definitions, CFS simply does not equal M.E. Using the two names interchangeably, or substituting one name for the other, raises problems.

The scientific and medical communities have reservations. That's important, most name-change advocates agree, because their support is critical to the success of any new name. As already noted, scientists reject the name myalgic encephalomyelitis because neither the brains nor spinal cords of most persons with this illness are inflamed. As for myalgic encephalopathy, there is mixed evidence and not enough, many scientists argue, to say with certainty that the symptoms of this illness originate in the brain. While most patients do experience brain fog and neurological problems, not all do, and the source of those symptoms is uncertain.

An American name change to M.E. creates serious problems for our fellow advocates in the United Kingdom. They are fighting to keep M.E. distinct from CFS, which has been defined by psychiatrists in England (the Oxford criteria) in such a way as to focus almost exclusively on fatigue and to include persons whose illness stems from primary depression. Thus there is some opposition from overseas to having the U.S. simply adopt M.E. as the new name for CFS without simultaneously adopting an M.E.-like definition.

Just what are the definition differences between M.E. and the U.S. version of CFS? M.E., as defined by Dr. Melvin Ramsay, has four key clinical features: prolonged muscle fatigue and tenderness following even minor exertion; circulatory impairment involving cold extremities and episodes of sweating, cerebral dysfunction involving impairment of memory and concentration, and fluctuating severity of symptoms. Only one of those features-fatigue-is required for a diagnosis of CFS, and even that is described differently. The U.S. Centers for Disease Control in 1994 established CFS as fatigue that persists more than six months, is not the result of ongoing exertion, is not relieved by rest, and causes substantial reduction in activity. To be so diagnosed, patients must also have at least four of eight other symptoms.  These include the post-exertional pain and fatigue and the cognitive impairment on which Ramsay focused, as well as sore throats, tender neck or armpit glands, general muscle pain, headaches, unrefreshing sleep, and multi-joint pain without swelling or redness.

In other words, one can have CFS without myalgia (muscle pain) or encephalopathy (cognitive impairment).

Perhaps the strongest argument in favor of M.E. is the more specific definition that comes with it.  M.E. seems to describe a subset-possibly also a majority-of the current CFS patient population. A clearer, more specific definition could eliminate much confusion in diagnosing the illness and it would help researchers by weeding out subjects whose illness is somehow different.

If the U.S. were to adopt M.E. without changing the definition of CFS, we would only add to the confusion about the illness-and muddy the waters for those who now use M.E. However, if the U.S. were to adopt M.E. and adopt the current M.E. definition at the same time, we would then have the problem of what to do with those patients who don't fit into the M.E. definition. Do they go back to the pre-diagnosis state of having a disease with no name? Do we simply leave them to deal with CFS, name, stigma and all? Clearly, we cannot let that happen.

I do not mean to dismiss M.E. (encephalopathy) as a future name for at least a part of the CFS community. It has a few inherent problems-the potential media insult of "the Me disease" and the public's basic uneasiness about brain disease-but those, I believe, are weak arguments against it. The real problem with M.E. is that it doesn't fit the illness we now define. So that's where we need to begin.

It's likely to be a complex process, and it will take a little time, but redefining the illness (or illnesses) that we now call CFS could lead to real progress toward better diagnosis, better research and greater understanding of this illness. Why not do that?