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News Archive
When items are removed from the News and Latest Information page they are pasted here.
News
about RLS:UK (removed
from news page 21/7/06)
Diagnosing restless legs syndrome (RLS) in primary care (Removed from news page 21/7/06)
Authors: K. Ray Chaudhuri; Alison Forbes; Donald Grosset; Andrew Lees; John Shneerson; Anthony Schapira; Paul Stillman; Adrian Williams
Source: Current Medical Research and Opinion, November 2004, vol. 20, no. 11, pp. 1785-1795(11)
Publisher: LibraPharm
This paper represents a review of current opinion and information on the effective diagnosis of restless legs syndrome (RLS) in a primary care setting. RLS can be a distressing condition – it can cause serious sleep disturbance and has a significant impact on quality of life comparable to that of depression or type 2 diabetes. The prevalence of adults whose RLS is severe enough to warrant medical advice has been estimated to be approximately 3%, but only a small proportion of these patients currently report having been diagnosed in primary care, despite stating that they have presented to their GP. The benefits of increased understanding of the symptoms of RLS and how patients present in primary care are discussed, with emphasis on how this will help GPs more effectively diagnose and manage the patients affected. Guidelines on how to diagnose RLS in a primary care setting are given – when a patient presents with sleep disturbance, RLS should be routinely considered and, where existing, be readily diagnosed in a primary care setting on the basis of the patient's clinical history, a physical examination and with the aid of four questions based on the International RLS Study Group (IRLSSG) four essential diagnostic criteria.
The full paper is available in PDF format. Click here and go to the bottom of page that opens
The paper has the following sections:
Underlying pathophysiology of RLS
Impact of RLS
Diagnosing RLS
An introduction to the management and treatment of RLS
Treatment Options
TV Programme (removed from news page 23/7/06)
We featured here a request for volunteers from amongst those who suffer sleep disorders. The note had said: We are looking for people whose lives are affected by Night Terrors, Restless Legs Syndrome or other similar problems, to be involved in a new documentary looking at the science behind the problems. We are working with sleep centres to look at the problems, reveal their causes and look for solutions.
The programme was being made by Parthenon Entertainment and they write that it is being broadcast on Sky1. {Update: Sky 1, May 1st, 9pm, "Britain's Worst Sleep Walker". Click here for a poster/flyer}. The company worked in conjunction with the London and Edinburgh Sleep centres and had a very successful time. The chap that the company were working with found what happened very beneficial. He has gone from having night terrors every night (3-5 times/night) and sleeping for only around 4 hours to being able to have full nights' sleep, many nights without any terrors and those that he does have, have become very tame in comparison to what he used to experience.
Scottish Medicines Consortium (removed from News page 5/8/06)
The Scottish Medicines Consortium have asked us for our details for a listing associated with their Patient Interest Groups. This is especially interesting as they are interested in the medications which may be taken.
Medical patch trials (removed from News Page 23/11/06 - information is therefore no longer current))
Are you losing sleep because of restless legs? Synexus Limited (URL is for locations map) is currently running a clinical trial of medication that may help to ease the symptoms of RLS. This is a new treatment administered by skin patch.
Volunteers are needed to help with the trials. If you live near the following centers, please contact them for further details.Reading Clinical Research Center: 0118-987-4088
Manchester Clinical Research Center: 0161-608-7790
Chorley Clinical Research Center: 01257 230 823
Telephone interview research of restless legs sufferers by AHP Research. (removed from news page 26/4/07 - information is no longer current and links do not work)
Someone to tell details of your condition to for up to an hour!!!.
"CALLING ALL PEOPLE WITH RLS"
We are inviting you to take part in a research study:'The Impact of Restless Legs Syndrome (RLS) on 'Quality of Life'
We are doing research to investigate how RLS affects people's quality of life. This will help to show ways in which RLS care and treatments can be improved.
We are looking for volunteers to take part in an interview. We will conduct the interview by telephone, which will take about one hour of your time.
During the interview, we will ask you a series of questions about:* aspects of life that are important for your quality of life
* ways in which RLS affects these aspects of life
* your general experience of having RLS
Would you like to take part? If so, please contact Olabisi Showunmi, Research Assistant (mail to: olabisi.showunmi@ahpresearch.com Telephone: 01895 273599)
Interviews will be conducted during March and April 2006
If you know of anyone who might be interested in taking part, please forward this message to them.We look forward to hearing from you. Thank you for your time.
Dr Jane Speight
Chartered Health Psychologist
AHP Research Ltd
Brunel Science Park
Kingston Lane
Uxbridge UB8 3PQ
Spot On Market Research (removed from news page 27/4/07 as the web site has dissapeared)
interview sufferers of various maladies for market research purposes often asking them to try new devices before they come on the market, they ask about the side effects of certain drugs or how illness affects their lives. They always pay participants for their time and of course no one is under any obligation to take part.
You can see why they do market research by clicking here for the patients-voice web site
You will see there is a patients' and a health care professionals' form on the web site. These allow you to register your interest with them.
They have been wondering if they should set up a form on the web site for sufferers (rather than patients) and ask if you would give them your views. You can call Trudy Edmondson (01737 559939) and tell her of your views or email her at the contact given here or write to her at:
Spot on Market Research International Ltd,
Provence House
23 Stagbury Avenue
Chipstead
Surrey
CR5 3PD
You might like to let us know what you said/how you get on.
This is quite an interesting development. Regular visitors to this site will have seen appeals for restless legs sufferers to take part in trials or media exposure which we feature from time to time. Of course, as things develop, there is going to be quite a market for trials and being positioned to make progress fast from the outset with the contracting pharmaceutical or other company, is an excellent way to land a contract with them for whatever is the work they want carrying out. And being with/registered with the appropriate company could get our members or other sufferers quickly involved if that is what they want. Now, by the time we contact people known to us to be available to volunteer for research, or for a television feature and report to the requesting company, quite a long time can elapse.
Drug Patch Tests (removed from news page 6/6/07)
One item proving difficult to progress is a drug patch test. It is a little way in the future but the supplier wants to operate in certain areas for the tests whereas our members are all over the UK.
EECP (removed from news page 6/6/07)
In newsletters 42 and 43 we mentioned the Flowtron machine and how effective it was in relieving the symptoms of restless legs.
A similar machine, used to treat angina was found to be effective for some patients who also had RLS. The treatment is called Enhanced External Counter Pulsation, (EECP). Six patients with RLS, aged 55-80 had EECP treatment for 3 to 6 months, which appeared to improve their RLS. Results suggest that EECP, unlike pharmatherapy, does not need daily treatment. Further studies, with a larger number of patients, are needed to draw further conclusions. More detail of a report about this will be given in the next newsletter due at the end of April 2005.
If you want to read more about EECP click here or here.Bandolier Announce new web site for Restless Legs Syndrome (RLS) (removed from News page 6/6/07)
Bandolier has announced a new Internet site dedicated to information about restless legs syndrome (RLS). Bandolier can be accessed through www.ebandolier.com, and the RLS site is to be found at www.jr2.ox.ac.uk/bandolier/booth/booths/RLS.html.
Bandolier is a print and Internet bulletin concerned with Evidence-based Healthcare, based in Oxford, and available in print since 1994 and electronically since 1995. Subscribers to the print versions pay for it, but Internet access is free to all.
Bandolier is fiercely independent, but accepts sponsorship from charities, government and industry to support its policy of free Internet access. Bandolier accepts only "no strings" sponsorship. Bandolier only accepts sponsorship when sponsoring organisations agree that they have absolutely no control over what Bandolier writes in its pages. RLS is diagnosed by clinical symptoms:
RLS is associated with major negative impact on quality of life. Patients with RLS had worse quality of life than the general population, and a generally worse quality of life than patients with hypertension, other cardiovascular conditions, diabetes, and osteoarthritis.
The Bandolier RLS site has been developed by searching the medical literature for studies about RLS, especially those of good quality, that are valid studies, and of reasonable size. Because RLS has not been well researched, there is a limited information, but every treatment for RLS that has been subjected to a randomised controlled trial has been located and summarised, so that sufferers, and their professional advisors, are aware of the extent of the available literature. The site will be periodically updated when new material emerges.
Bandolier’s RLS pages were sponsored by an unrestricted educational grant from GlaxoSmithKline Ltd.
Need a Neurological Opinion about your restless legs? (Removed from News page 6/6/07)
If you want a neurological opinion about your RLS, up-to-date advice about your treatment and information about the clinical trials in RLS, then you can visit the national RLS clinic, run by Dr. K R Chaudhuri, at King's College Hospital, London. This is the only dedicated RLS clinic in the UK.
Follow this link for further information.
Volunteers Wanted: (Removed from news page 6/6/07)
Members are required to take part in a survey, "State of the Nation" for Sky TV. at London, Birmingham, Manchester, and other venues. They will be studying sleep patterns over a 3-month period. Transport will be arranged. If you cannot get to them, they can come to you. If interested, please contact: Rob on: 0207 659 2770 or e-mail: stateofthenation@tigeraspect.co.uk and mention RLS survey.
There will be no general meeting of the RLS:UK group this Autumn, only a short period of
discussion by the academic group members. We hope to be able to put details of
subjects discussed, on the web and in the next newsletter, shortly afterwards.
It is proposed to arrange a full AGM in the Spring 2007, when information on the date,
time and venue have been decided.
Scottish Medicines Consortium meetings. (Removed from the news page 6/6/07)
In recognition of our efforts and to provide a greater understanding of the SMC process, a representative from our group has been invited to attend a SMC meeting as an observer.
These meetings are held on the first Tuesday of each month, starting at 2 pm. (includes lunch first) and last about 3 hours.
If a drug specific to the area of Restless Legs is allocated for review, we will be asked to attend on that Tuesday. There is room for one representative only to attend and the venue is Glasgow.
Anyone interested in representing the Ekbom Support Group please contact Beverly Finn for further details.
It is not going to be often that a RLS drug is scheduled for discussion so this is not an onerous task. Give it a try.
Volunteers from Glasgow Area Wanted. (Removed from the news page 6/6/07)
The chairperson of the European Federation of Neurological Associations (EFNA) is holding an event in Glasgow in the autumn at which people with neurological conditions will be demonstrating an artistic, literary or musical talent of some sort. She would like to include someone with RLS in that area.
If you know of anyone with a talent of this nature, or you have one yourself and can help, please send an e-mail to Karen at : karen.lipworth@clew.com and tell her about it.
Volunteer Families wanted. (Removed from the news page 6/6/07)
Dr.Oliver Bandmann of the Royal Hallamshire Hospital, Sheffield, who has a scientific interest in the genetic aspect of RLS is looking for Northern families with at least ten living family members who all suffer from Restless Legs Syndrome, to take part in a study that he is planning soon.
If you feel you and your relatives can help him, please telephone his secretary: 0114-271-3005or e-mail: o.bandmann@sheffield.ac.uk to get more details
Volunteers Wanted. (Removed from News page 28/3/08)
When we removed this item from the news page it was because we were in difficulties passing on enquiries. You can see the original item below by highlighting the text in your browser and copying. Frankly it is not worth that effort.
If you have RLS, are not on medication and live in the Tring/Aylesbury, Herts. area, would you like to take part in a free trial?A physiotherapist feels she could help us and would like to conduct a trial to see if RLS patients would benefit from a course of treatment.
If you are interested, please contact us with your address and telephone number.
