From RLS to WED - why the name change

[ViewsAskew]

The International RLS Study Group wrote a paper included on their Website about why they agree to a name change of the disease. The name change will take place over time. The following was written in 2011, in advance of the RLS Foundation announcing that agreed with this and also were on board with a name change.

Note that they say that the two names will coexist for a period of time and that the term RLS may continue to be used in some circumstances.

http://irlssg.org/introducing-transitio ... e-for-rls/

Restless Legs Syndrome – 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, dopamine
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 Lyme disease, 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 dementia), Parkinson disease (paralysis agitans), Down
syndrome (Mongolism) and Hansen’s disease (leprosy). The group favored WillisEkbom 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” (MerriamWebster 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.

[Polar Bear]

Thank you for this, nice to refresh us.

As an aside....but still with regard to the name change - There are folks who prefer not to use the term WED,
Personally, I much prefer to use the term 'WED Movement Disorder' and feel it does not raise the conotation of RLS being perceived as a joke.

[ViewsAskew]

Change is often difficult! Even when you like it!

Overall, I think the name change is important, at least here in the US. Not sure if it's necessary in other countries - I just don't know enough. In order to get funding for it, to be taken more seriously - those are important to me. I also suppose I appreciate that the name change helps get rid of the perception that it's only in the legs or that it's just that you are restless. That always seems to me to be more like the people who shake their legs all the time when sitting.

Mostly, if the Foundation thinks it's helpful, I'm with them. They know better than I do how to get funding and attention.

But, you're right, PB, many people don't like the change. I've seen some heated debates in some forums/groups. All viewpoints are welcome here - let's just keep it civil .

[badnights]

I applaud the people who initiated the name change; no small undertaking. I agree whole-heartedly that the name needed changing in order to underscore the seriousness of the disease (as Robert Yoakum quoted someone saying in his book - excuse the paraphrase, I don't have the book handy - : "would Parkinson's disease ever have received any funding if it were called Shaking Head Syndrome?").

But I do find that WED does not roll off the tongue as well as RLS, and I find myself referring to RLS because people know of it, rather than WED which sounds funny whether I pronounce it as a word or name each letter.

[ViewsAskew]

Yeah, not an easy solution. RLS - the initials - are easy to say. And, people do understand them. It's definitely not going to be an easy thing. I have to trust that these folks thought up all the possible combinations and this seemed the best. Short of making up a work - a Dr Suess word would be great, lol - not sure what their options were. Restless body syndrome doesn't resolve the syndrome part, not that restless isn't really what is happening. Restless, to me, has never really been descriptive of how I feel - it's more like a miniature madmen inside my muscles with some version of a cattle prod, poking and zapping me at various places, sending surges of energy around. I just can't think of a snappy way to describe that!

It's like the Nyquil marketing phrase - "the nighttime sniffling, sneezing, coughing, aching, stuffy head, fever, so you can rest medicine" - we'd have to have the same, like, "the leg, arm, anywhere creepy painful annoying anxiety-provoking sensation that keeps you from rest, sleep, work, fun, or living your life disease."

[rthom]

[Polar Bear]

Ann - your last paragraph - excellent.

[badnights]

we'd have to have the same, like, "the leg, arm, anywhere creepy painful annoying anxiety-provoking sensation that keeps you from rest, sleep, work, fun, or living your life disease."

. LAACPAASTKYFRSWFOLYLD, for short.

Or add an E for electrical and U for unbearable & get LAACEPAUASTKYFRSWFOYLD

You can even pronounce it, as Lace paw-ast kyfers w-follil disease. (WFOLYL is difficult, admittedly). Maybe it will catch on.

[rthom]

[Polar Bear]

[ViewsAskew]

We could always work those words a bit to make that more pronounceable .

[badnights]

challenge!