– Willis-Ekbom Disease: Why the name change?

The International Restless Legs Syndrome Study Group (IRLSSG) established an advisory group of interested specialists in Restless Legs Syndrome to review the possibilities of advocating for a change in the medical name of the disorder. The group held 3 conference calls as well as on-line discussions and several email interactions. This document summarizes the results of these discussions and recommendations.

What are the advantages and disadvantages of considering a change in the name of Restless Legs Syndrome?

The term “restless legs” can be considered an oxymoron (internal contradiction), as legs are designed to move. The term is considered humorous by many, including comedians and the media, potentially trivializing the disorder in the eyes of the public as well as research funding and drug regulatory organizations. Some media reports imply that the condition has been fabricated by the pharmaceutical industry and this resonates with those who consider the name to be amusing. A large percentage of patients have an urge to move the arm and thus the word “legs” is not fully descriptive of the disorder. The word “syndrome” suggests a cluster of symptoms or other common features, rather than a defined disease.

On the other hand, the name is descriptive of the symptoms and most affected by RLS immediately relate to the disorder when they hear the name, although this may be less the case with the translation used in some countries. The disorder has become widely recognized by primary health care providers under its current nomenclature. A large scientific literature has been published, again using the name RLS.

The majority of the group felt that the long-term advantages of a change in name outweighed the disadvantages, although short-term difficulties with recognition and acceptance were appreciated and both the new and the existing names would need to be used together during a transition period. The entire group felt that further input should be obtained, initially from the Board of Directors of the Restless Legs Syndrome Foundation and the Executive Committee of the International Restless Legs Syndrome Study Group. If a proposal to change the name were to move forward, it would then be necessary to canvass the support of other groups such as the Movement Disorder Society, the American Academy of Sleep Medicine and the American Academy of Neurology.

Syndrome, disorder or disease?

The group felt strongly that the word “syndrome” should be dropped, as it does not adequately indicate that the condition has a well-defined symptomatology and pathophysiology. Recent advances in the science of RLS (including genetic, transmitter, and brain iron discoveries) and a revised definition excluding mimickers of the condition and specifying clinical significance criteria warrant the elevation of RLS from a syndrome to a disorder or disease.

There was considerable debate regarding the two alternative terms, “disorder” and “disease.” “Disease” sounds more serious and clearly indicates a definite pathologic entity. There are many examples of “disease” as part of the names of commonly recognized conditions, including , heart disease, Parkinson disease, and celiac disease. However, some patients may be more comfortable with the less threatening term “disorder”, and the two terms are often used interchangeably. The consensus of the group was that “disease” was preferable.

What criteria should be considered for a new name?

Ideal characteristics of a new name would include meaningfulness, seriousness, simplicity, ease of recall and verbal expression, and uncomplicated translatability into other languages. Preservation of the initials “RLS”, while ideal, was not felt to be a dominant factor in selection.

Ammended Principal Recommendation

The group considered many alternative names, some eponymic and some based on symptoms and biology. Following extensive discussion, the principal recommendation is that Willis-Ekbom Disease be considered the most appropriate replacement for the name restless legs syndrome. This might also be used as an alternate professional name with restless legs remaining in some environments where it has less negative implications much as leprosy and Hansen’s disease are still both used.

This eponymic name has the advantages of dropping all potentially trivializing descriptors, such as “restless” and “legs”, as well as honoring a pioneer in the recognition of the disorder. It is serious, simple, and easy to remember and express. Translation into other languages would be easy. While there has been a general tendency in the United States to move away from eponyms, these remain prominent in labeling certain disorders in which the alternative name has negative or politically incorrect connotations. These include Alzheimer disease (senile ), Parkinson disease (paralysis agitans), Down syndrome (Mongolism) and Hansen’s disease (leprosy). The group favored Willis- Ekbom disease due to the earlier contribution of Thomas Willis and the wider recognition of his name.

What alternative names were considered and rejected?

The following discussion lists the alternative names that were considered, their possible advantages, and the reasons they were rejected.

 Ekbom Disease( EkD)

This name was our original first choice because of its simplicity and appropriate recognition of the man who first fully described the disease. The power of the web however makes this an undesirable choice since a Google search produces “Delusional parasitosis (also known as "Ekbom syndrome." Our new name should have a positive appeal without complications. Clearly this would not be the case with this name. We would be adding a new problem.

 Restless Limbs Disorder/Disease (RLD)

This name is descriptive and simple, recognizing the involvement of arms as well as legs. However, it is sufficiently close to the current name that the group felt that the changes might not be worth the effort. The word “restless’ is preserved, which might continue to be considered humorous or trivial.

 Restive Limbs Disorder/Disease (RLD)

“Restive” is defined as “stubbornly resisting control”, balky” or “fidgety” (Merriam- Webster dictionary), all descriptions that can easily be applied to the limbs of a patient with the disorder. The term has a more serious flavor than “restless,” while describing a similar quality. However, the term “restive” is not well-known and would probably drift back to the original “restless.” The distinction may also be lost in translation into other languages.

 Rest-induced Limb Sensorimotor Disorder/Disease (RLSD)

This name is descriptive and partly retains the RLS abbreviation. However, it is complex, being hard to remember and express. In addition, “rest-induced” might still be considered humorous.

 Limb Akathisia

While akathisia (uncontrollable motor restlessness) would accurately describe RLS, the term is non-specific and more often applied to a complication of neuroleptic therapy. To avoid confusion between the conditions, and to avoid the connotation that RLS is caused by medications or occurs predominantly in patients with psychoses, the group felt it best to avoid this term.

Next Steps

The group recommends that the Board of Directors of the Restless Legs Syndrome Foundation and the Executive Committee of the International Restless Legs Syndrome Study Group consider this summary and principal recommendation and consider what action, if any, would be most appropriate.

(Since first producing this report the board of directors of the RLSF in the United States has voted to adopt the Willis-Ekbom Disease as the preferred name for the condition. )

Respectfully submitted,

Richard P. Allen, Ph.D.

Diego Garcia-Borreguero, M.D.

Daniel L. Picchietti, M.D.

Michael H. Silber, M.B.Ch.B.

John W. Winkelman, M.D., Ph.D.