Take Action: WEDF's response to British Medical Journal

Editor British Medical Journal January 20, 2014 Dear Editor, As interim director of the Willis-Ekbom Disease Foundation and mot...

Editor
British Medical Journal
January 20, 2014

Dear Editor,

As interim director of the Willis-Ekbom Disease Foundation and mother of a daughter who has a severe case of WED/RLS, I write to counter the “commissioned commentary” of Dr. Des Spence about Willis-Ekbom disease, also referred to as restless legs syndrome, or WED/RLS.

Dr. Spence begins his commentary by listing neurological conditions that allegedly “are based upon symptoms that patients report themselves” in the absence of “objective tests.” He might have added schizophrenia and, until recently, Alzheimer’s disease to his collection. WED/RLS is a serious, chronic medical condition that was identified by Sir Thomas Willis in the 17th century and described in the medical literature in 1945 by Dr. Karl Ekbom, who named the disease restless legs syndrome. The diagnosis of WED/RLS is based on the confirmation of four essential diagnostic criteria established in 2002 at a National Institutes of Health workshop and recently revised by the International Restless Legs Syndrome Study Group. (See http://www.rls.org/wed-rls-diagnostic-tool).  Research supported by the National Institutes of Health, after rigorous review and published in high quality peer-reviewed scientific journals, has identified alterations in brain and lymphocytes that enable investigators to differentiate individuals with WED/RLS from healthy “control” populations.

Dr. Spence makes three “observational” arguments to support his view that WED/RLS is either a rare condition or one that was fabricated by greedy pharmaceutical companies. First he notes that in 20 years of practice, he has never seen a patient with this condition. One wonders whether he would have recognized the problem if one of his patients had it. Even if he feels that he is competent to make the diagnosis of WED/RLS, this is no way to do epidemiology.

Second, Dr. Spence points to the involvement of pharmaceutical companies in supporting WED/RLS research and implies that they bribe clinical investigators to serve as drug salespeople. The clinicians at WED/RLS Quality Care Centers (Johns Hopkins Center for Restless Legs Syndrome, Mayo Clinic, and The University of Texas Health Science at Houston) would surely be offended by this suggestion, and I am too. These clinicians focus on what is best for their patients who have WED/RLS, just as they do for patients with other diseases. Until Dr. Spence and his like-minded colleagues begin to develop and manufacture drugs and give them away for free, we will have to rely on companies to produce them.

Finally, Dr. Spence says that in his view “the biological basis of RLS is implausible,” without bothering to mention the scientific studies of the pathognesis of the illness that have offended him so much. There is no scientific rigor in this argument.. Had he delved into the literature, he would have found that WED/RLS is seen in pregnant women who need iron supplements and in other patients who are iron deficient. It is common in people with diabetic neuropathy and in renal dialysis patients; and it is sometimes idiopathic. The idiopathic form, which is often familial, is associated with a defect in iron metabolism in the central nervous system and a reduction in dopamine there. Thus, it should not be surprising that dopamine agonists have been found to mitigate symptoms.

WED/RLS is a REAL disease affecting REAL people. Each day, millions of individuals suffer from the effects of WED/RLS. In many cases, WED/RLS symptoms are 24/7 and significantly affect all areas of life. An article in the Journal of Neural Transmission in 2007 reported that it typically takes 12.7 years from the onset of symptoms for the diagnosis of WED/RLS to be made and for treatment to be commenced. Suggesting that the disease is a figment of our imagination will not help the situation. Articles like the one Dr. Spence wrote do harm to individuals who are living with a chronic, often debilitating condition. I am surprised that the BMJ would commission an essay like this. It’s bad medicine.

Cordially,

Karla M. Dzienkowski
Interim Executive Director, Willis-Ekbom Foundation
Formerly the Restless Legs Syndrome Foundation
www.willis-ekbom.org


 Note: An article published December 19 in the British Medical Journal questions current practices in WED/RLS diagnosis and treatment. We are asking the WED/RLS community to take action by reading the article: “Bad Medicine: Restless LegsSyndrome.” A subscription is needed to post a direct response. However, a free 14-day trial subscription is available.


The Restless Legs Syndrome Foundation is the leading organization for science-based education and patient services for people suffering from restless legs syndrome (RLS). It is also the only organization with a dedicated research grant program to advance promising research leading to new treatments and a cure. Our goals are simple: increase awareness of RLS, improve treatments, and, through research, find a cure.

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