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Restless Legs Syndrome (RLS), also known as Willis-Ekbom disease, is a neurological disorder characterized by an irresistible urge to move to stop uncomfortable or odd sensations. It most commonly affects the legs but can also affect other body parts such as the arms and torso. Moving the affected body part reduces the sensations, providing temporary relief.
Restless Legs Syndrome is frequently unrecognized, misdiagnosed and poorly treated. Symptoms are particularly troublesome in the evening and night. RLS can have a detrimental impact on relationships, employment and the psychological well-being of peope living with it.
EARLS is a non-profit, independent alliance of national patient organizations from various European countries which engages in activities that contribute to raising awareness of Restless Legs Syndrome (RLS). EARLS raises important issues at a European level, issues which are common to all members.
News & Events
The Executive Committee of the International Restless Legs Syndrome Study Group (IRLSSG) decided two years ago to create two a task force to perform an evidence-based review of the long-term efficacy and toxicity of RLS treatments. The main reason was that long-term treatment of this disorder has specific problems that may affect efficacy and are normally not addressed in shorter studies.
In addition, the task force considered it important to come to a consensus and establish recommendations based on experienced on those issues where no specific data were available. The results of this were presented and approved at the annual IRLSSG Meeting in Boston 2012 and were shown on our web page as Summary Recommendations for the long-Term Treatment of RLS/Willis-Ekbom disease.
In the meantime, the full manuscript has been peer reviewed and published in Sleep Medicine where it can be freely downloaded at the www.irlssg.org website. The report contains important recommendations such as which treatment to start first and when, how to manage loss of efficacy and augmentation, and how to handle the main side effects of long-term treatment.
01/08/13: The long-term treatment of restless legs syndrome/Willis–Ekbom disease: evidence-based guidelines and clinical consensus best practice guidance: a report from the International Restless Legs Syndrome Study Group
EARLS study presented at World Association of Sleep Medicine Conference, Valencia, Spain, 28 September-3 October
During the recent meeting of the World Association of Sleep Medicine (WASM), EARLS proudly presented the results of the study of 11,731 RLS patients from nine European countries as well as the USA and Canada. The WASM organizing committee had accepted three EARLS presentations: 1. Diagnosis of RLS, 2. Sick leave and disability due to RLS, and 3. dosages used of RLS medicines. The posters attracted a lot of attention. Many lively discussions took place and new ideas were brought forward. The delegates were much impressed by the vast number of questionnaires analyzed and the accuracy with which these had been submitted by the RLS patients. The EARLS study was considered special because the population studied were all members of patient organizations.
Thus, EARLS have once again asked for urgent attention for the problems RLS patients are facing in getting a proper diagnosis, in having to stay home from work, and of topics such as augmentation when too high doses of the dopamine agonists are given - which the study has shown occurs all too often.
During a medical consultation there is limited time and it can be hard to accurately look back and relay when our symptoms were at their worst. With this in mind, ‘My RLS Monitor’ has been developed, a seven-day tracker for symptoms to allow you to report your symptoms more comprehensively to your doctor.
We hope this will allow both you and your medical practitioner to spot patterns and/or to help compare these symptoms with previous monitoring and to help keep a track on medication.
‘My RLS Monitor’ has been developed by UCB after extensive consultation with RLS focus groups, including EARLS, as well as other European RLS organisations. You can download (16.4MB) a copy of the RLS Monitor to print at home.
23/09/14: International RLS Awareness Day sees launch of new RLS Monitor
EARLS at World Congress of Neurology, Vienna, 20-25 September
For the first time, a Patient Corner was organized in conjunction with other neurology groups in the Exhibition Centre at the World Congress of Neurology. EARLS had secured a prominent place and was able to distribute information and network with the delegates from across the world. Other participants included European Headache Alliance, European Huntington’s Association, European Polio Union, International Brain Tumour Alliance, Danish Trigeminal Neuralgia Association, ADHD Europe, Pain Alliance Europe, Euro-Ataxia, European Multiple Sclerosis Platform.
EARLS used this opportunity to promote our work and increase awareness for Restless Legs among the 7,500 delegates. Many new contacts were made. On September 23rd, International RLS Awareness Day, we organized a RLS Quiz (bottom left). Nine questions on RLS were asked, ranging from the obvious to the more detailed or the latest information. Prize to be won was a bottle of real good Austrian wine. Many delegates gave this a try, but there was only one person, a young neurologist from South Africa (large image left), who knew all the answers. Second and third prizes went to neurologists from India (bottom right). Doing this proved to be an excellent way of attracting people to the booth and talking with them about the RLS situation in their respective countries. New contacts were made in many countries where EARLS are not yet present.
01/10/13: European Medicines Agency publishes a video explaining the concept of medicines under additional monitoring
A black triangle will start appearing on product information this autumn to encourage reporting of suspected adverse reactions.
The European Medicines Agency has published a video and a factsheet in all official European Union (EU) languages today explaining the meaning of the black triangle, which is now starting to appear in the product information of certain authorised medicines in the EU. The black triangle has recently been introduced in the EU as part of the concept of medicines under additional monitoring and is an important deliverable of the new European pharmacovigilance legislation.
Click here to be brought to the European Medicines Agency website where you can find more information.
The EARLS Board met for its General Assembly Meeting in Brussels on February 17th.
Photo 1: The EARLS Board, from left to right: Pentti Fri, Finland; Britt Berntsen, Norway; Sten Sevborn, Sweden; Monica Twamley, United Kingdom; Joke Jarsma, The Netherlands; Manuela Garcia, Spain; Esperanza Lopez, Spain; Anne Teisseire, Finland.
Photo 2 & 3: A meeting in full concentration.
28/02/14: EARLS General Assembly Meeting held in Brussels 17th February 2014