Sleeping on the Internet: resources to help you sleep
 
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Sleeping on the Internet: resources to help you sleep

The Internet and the World Wide Web are valuable resources for anyone with an interest in, or a problem with, sleep. This article is intended to introduce you to the sleep-related content that is waiting for you on the Internet.

by Jerry Halberstadt

It you have, or suspect you have a sleep problem, or if you care about someone with a sleep problem, you can learn how to get help. If you know you have a problem and are in treatment, you can get important information as well as find and share with others having similar problems. People with a professional interest in sleep can meet new people including professionals like yourself, patients, or others involved in sleep. You can communicate with and involve your patients to share experiences and tips, to learn how to solve technical problems, to enjoy mutual support, or to organize groups for support and education. When you or your patients need to do some research on sleep-related topics, you can turn to the Internet. Join the fun!

We provide two sites: Phantom sleep resources (snoring, sleep apnea) {http://www.newtechpub.com/phantom} with extensive information about sleep apnea and other sleep disorders.HealthyResources.com{http://www.healthyresources.com} enables people with sleep disorders to take charge of their treatment by enabling community interaction, providing authoritative information (written by patients and health-care professionals), and by marketing products, books, and other selected items. This article is provided as your guide to some of the other resources available on the Internet.

Sleep resources on the Internet and WWW

Forums for news and conversations about sleep

Are you seeking a community for sharing, education, and support? Participants seeking information or support include patients with a wide variety of concerns and problems involving sleep. Others are patients whose main concern seems to be to assist others through sharing of experiences, feelings, and information. Participants may include professionals in sleep disorders such as physicians, technicians, and therapists; and employees of sleep-treatment equipment manufacturers.

In joining a newsgroup, it's a good idea to read a week's worth of postings without participating in order to see how the discussions take place and see how best to fit in. You may find it helpful to read the sleep apnoea Frequently Asked Questions (FAQ) . Then, just state who you are and what you want to share or learn---you'll find a friendly response. You can reply to people individually in a mail message, or post to the whole group.

HealthyResources.com

Coming soon--in February 1999--forum hosted at Healthy Resources http://www.healthyresources.com

alt.support.sleep-disorder

A very useful news group for people who have or treat a sleep disorder is sleep disorders{http://news:alt.support.sleep-disorder}.

SleepNet bulletin board

SleepNet has an extensive library of postings. One board is for public and professional postings, another is for postings by health care professionals. http://www.sleepnet.com/wwwboard/wwwboard.html

Other news groups

There are newsgroups on chronic fatigue syndrome {http://news:alt.med.cfs }, fibromyalgia alt.med.fibromyalgia , dreams alt.dreams, and many other health and sleep-related topics, and if your concern is not covered, anyone can start a news group.

Sleep Activism

Not a forum or list, but worth seeing what Bill Dement, the ultimate activist in sleep medicine, is doing at the Sleep Wellhttp://www.stanford.edu/~dement/

Dave Hargett has started a mailing list devoted to Sleep Activism, to enable those of us who are truly interested in increasing public awareness of sleep disorders, to have a forum where we can share ideas and information in a free and easy manner, without interference from those who have no interest in the subject matter. If you are interested in joining this list, then email [email protected] and in the body of the message indicate: subscribe sleep-activists. If you want more information before you join, email [email protected] and in the body of the message indicate: info sleep-activists. Dave Hargett {mailto: [email protected]} List Owner [email protected]

Directories of sleep-related resources on the web

Dr. Michael Thorpy, the Director of the Sleep-Wake Disorders Center at Montefiore Hospital in the Bronx, New York has created The Sleep Medicine Home Page at The Sleep Medicine Home Page {http://www.cloud9.net/~thorpy/ }. It is a master table of contents for sleep on the web--there are links for many resources. It is somewhat slanted towards a professional audience and covers topics like the physiology of sleep, clinical sleep medicine, sleep research, federal and state information, and business related groups, yet it also covers topics of interest to patients.

Another extensive compendium of links is SleepNet (Everything you want to know about sleep but are too tired to ask) maintained by "Sandman" at SleepNet {http://www.sleepnet.com/}. "Sandman" is Roy Smith, RSPGT, who maintains this page for the benefit of people interested in sleep and sleep disorders. Roy works at the School of Sleep Medicine in Palo Alto, California and is a contractor for NASA on the Fatigue Countermeasures Program.

Doug Linder, an apnoea (sic) patient and computer systems administrator, created S.N.O.R.E, information on sleep apnea and other sleep disorders. Some useful information for novice readers of alt.support.sleep-disorder is found in Linder's Sleep Apnoea/Apnea FAQ ("Frequently Asked Questions". Linder has generously made his materials available through the Phantom Sleep Page. Thanks, Doug!

Dr. William Dement, M.D., Ph.D. is a pioneer in sleep disorders research and medicine and Chairman of the National Commission on Sleep Disorders Research. Barbara Shoup manages their site of The Sleep Well at {http://www.stanford.edu/~dement/} , providing information on sleep and sleep disorders. The topics include sleep activism, support groups, listings of professional organizations and accredited sleep disorders centers, a calendar of events, and listings of news and media events.

Since pulmonologists and other professionals concerned with respiratory care are often involved in treating sleep apnea, this extensive listing of respiratory health institutions {http://www.xmission.com/~gastown/herpmed/respi.htm}and companies in the field of respiratory care can be helpful in locating related web sites. It is maintained by Steve Grenard, a professional involved in treating sleep disorders.

Patient support and education groups

In the United States, many support groups are autonomous local organizations and may be supported by a local hospital, sleep center, or home care supplier.

In Chicago: A.W.A.K.E. - Elk Grove Village at Alexian Brothers Medical Center Auditorium A of the Brock Medical Building at Alexian Brothers Medical Center in Elk Grove Village. Remember! -- spouses and partners are welcome! Dave Hargett {mailto: [email protected]}President, Elk Grove Village, IL A.W.A.K.E.

The active and innovative A.W.A.K.E. New York group has a page A.W.A.K.E. New York at which serves as their newsletter. Marlene Greene, an active member and officer of the AWAKE group, maintains this resource in order to help others with sleep apnea. Her other interests include theatre and computers.

The American Sleep Apnea Association {http://www.sleepapnea.org/}promotes education and awareness, the A.W.A.K.E. Network of voluntary mutual support groups, research, and continuous improvement of care. There is no publicly available directory, you need to join to get a reference to a local group if one exists.

International listing of patient support and education groups

Country Organization Web site and email contact(s)
Canada Bev Devins, Executive Director
Sleep-Wake Disorders Canada
3080 Yonge Street #5055
Toronto ONT M4N 3N1
CANADA
Tel: 416-483-9654
FAX: 416-483-7081
email to Sleep-Wake Disorders Canada

[email protected]

Sleep-Wake Disorders Canada

http://www.geocities.com/~sleepwake

Africa, South Africa Attention: Annette Van Rensburg
Sleep Apnea Help & Support Group (South Africa)
POBox 351, Pietermartizburg, 3200
South Africa
Tel: 0331-421-913
FAX: 0331-452-162
Annette Van Rensburg

Annette Van Rensburg
[email protected]

Australia
New Zealand
South East Asian markets
Mr. Leslie Louttit
Sleep Disorders Australia, SDA Bookshop
POB 303, Roseville NSW 2069
Tel: 02-9415-6300
FAX: 02-9416-9727

Australia now has a national group for support, education, and advocacy and their site Sleep Disorders Australia is worth a visit. Several regional groups for support and membership. Many benefits from joining, for example, the printed newsletters are of the highest quality. For information, contact Leslie Louttit; he is an energetic organizer and advocate.

Leslie Louttit <[email protected]>


Leslie Louttit

Sleep Disorders Australia <http://www.span.com.au/apnea>


Sleep Disorders Australia http://www.span.com.au/apnea
England, Great Britain Mrs. Claire Mitchell
Sleep Apnoea Trust
99 Mill Hill Road, London, W38OF
Tel: 44-181-992-9920
Fax: 44-895-449-849 (Attention: Bob Mitchell) Sleep Apnoea Trust

mailto:[email protected]

Sleep Apnoea Trust

http://www.net.link.co.uk/users/jja/sat


Sleep Apnoea Trust
Spain Roncadores Ansnimos. Asociacisn de Transtornos del Suego (Snorers Anonymous, Sleep Disorders Association.

Spain has an education and support group, Roncadores Ansnimos. Asociacisn de Transtornos del Suego (Snorers Anonymous, Sleep Disorders Association. Their web site Roncadores Ansnimos. Asociacisn de Transtornos del Suego (Snorers Anonymous, Sleep Disorders Association) includes translations of materials from the Phantom Sleep Page, including Cuestionario de autoevaluacisn de Apneas de Suego.

Books, book reviews, bibliography

Book reviews by Lynne Lamberg

Lynne Lamberg, who has written several books on sleep topics, has a column of reviews of books on sleep {http://bisleep.medsch.ucla.edu/books/}.

Reviews and Bibliography of Sleep and Sleep Disorders

This bibliography is designed as a resource for people with a sleep problem. It is intended for those who are taking responsibility for their own health in partnership with competent professional care-givers or learning how to get a correct diagnosis and effective treatment. The references are listed under five headings: a) Books on snoring and sleep apnea; b) Book on sleep disorders in children; c) Internet resources on snoring and sleep apnea; d) Books on achieving good sleep and overcoming other sleep disorders e) Books on the science of sleep, sleep medicine, and policy Bibliography of Sleep and Sleep Disorders {http://www.newtechpub.com/phantom/articles/bibliography.html}

Extensive Annotated Bibliography of Sleep and Sleep Disorders

William Dement's BookWell http://www.stanford.edu/~dement/bookwell.html

Therapies for snoring and apnea

Locating qualified professional care

The ASDA directory of accredited centers and laboratories {http://www.asda.org/centers.htm} can help locate the accredited facility nearest to you. A sleep disorders center is a medical facility providing clinical diagnostic services and treatment to patients who present with symptoms or features that suggest the presence of a sleep disorder. A laboratory for sleep-related breathing disorders provides diagnostic and treatment services limited to sleep-related breathing disorders, such as obstructive sleep apnea syndrome.

Comprehensive book on sleep apnea

Phantom of the Night by TS Johnson MD and Jerry Halberstadt includes a comprehensive overview of diagnosis, therapies, and treatments for snoring and apnea. This book is intended to help each patient to consider the treatment choices and work with his or her physician to select, and succeed, with the one most appropriate to his or her needs. A major focus is the use of Continuous Positive Airway Pressure (CPAP) to keep the airway open during sleep. CPAP is the 'gold standard' treatment for apnea but not the only one. Each therapy must be considered carefully, and this book provides a solid basis for such a decision.

Dental devices or oral devices

Snoring and sleep apnea can sometimes respond to treatment including dental devices. This must be approached carefully and with caution, and treatments should be evaluated with a sleep study. For information provided by Larry Barsh, a dentist with a strong interest in the treatment of sleep-disordered breathing, see Quietsleep. The site includes information about the Sleep Disorders Dental Society, an international group of professionals concerned with the treatment of sleep-disordered breathing.

Snoring

For an illustrated medical overview of snoring and approaches to treatment of snoring, see CNS . The booklet has excellent illustrations in color and it has been written by recognized experts in the field.

Surgery

LAUPis a new laser surgery often promoted for snoring and/or apnea. It needs to be approached with great caution!

Sleep apnea diagnosis and treatment at University of Pennsylvania This article reviews not only the basics of sleep apnea--the impact of it, symptoms, diagnosis, and treatment--but includes fascinating images demonstrating the actual anatomy where the airway is obstructed. Based on Magnetic Resonance Imaging (MRI), ongoing research work by Dr. Richard J. Schwab and others pinpoints the role of enlarged lateral pharangeal muscles in apnea, and the finding that apnea tends to occur at the end of an expiration.

Organizations

The American Sleep Disorders Association (ASDA)

The American Sleep Disorders Association (ASDA) is an organization serving sleep professionals, both clinicians and researchers. The ASDA sets standards for sleep disorders centers and laboratories that provide diagnosis and treatment for a wide range of sleep disorders including snoring and sleep apnea. The ASDA also publishes research findings and position papers defining and evaluating clinical procedures. A major annual gathering of professionals in all fields of sleep medicine and research are known as the APSS meetings, jointly held by the American Sleep Disorders Association and the Sleep Research Society.

The National Sleep Foundation

The National Sleep Foundation {http://www.sleepfoundation.org/} The National Sleep Foundation is a nonprofit organization that promotes public understanding of sleep and sleep disorders and supports sleep-related education, research and advocacy to improve public health and safety.

The American Sleep Apnea Association

The American Sleep Apnea Association {http://www.sleepapnea.org/}is dedicated to reducing injury, disability, and death from sleep apnea and to enhancing the well-being of those affected by this common disorder. The ASAA promotes education and awareness, the ASAA A.W.A.K.E. Network of voluntary mutual support groups, research, and continuous improvement of care.

NASA Ames

Fatigue has finally begun to be recognized as a threat to safety in all aspects of transportation, including driving private vehicles or long-haul trucks. NASA and the US Department of Transportation are among the leaders in addressing these issues. The NASA Ames center has created an excellent collection of information and resources dealing with understanding and dealing with fatigue in the context of transportation. NASA Fatigue Countermeasures Program Resource Directory is extensive and includes bibliographies, overviews of activities by research institutions, industry, government, and educational organizations. It includes a directory of accredited sleep labs in the US and a listing of sleep- and fatigue-related sites with links.

Other sleep disorders

Narcolepsy

Narcolepsy is represented in cyberspace: You can get information from the Narcolepsy Network, including a FAQ: Narcolepsy Network You may find important additional support and information through the Narcolepsy On-Line and Discussion Group for narcoleptics, their families, and care-givers, a mail list. To subscribe, send email to [email protected] and in the body of the message write only "subscribe narcolepsy" (leave out the "" marks). You will be automatically enrolled. Dana Groff, the list owner, can be reached by mailing to <[email protected]>Dana Groff.

Fibromyalgia

Sleep apnea disrupts sleep architecture. Another disorder associated with poor quality deep sleep is fibromyalgia, affecting about 4-5% of the population. People experience aches, fatigue, and have tender points. It is not caused by inflamation, depression, or anxiety and it is often not diagnosed. An excellent starting point for information on this condition is the Fibromyalgia Info Page.

Restless legs syndrome

The Restless Legs Syndrome Foundation{http://www.rls.org/index.htm} is a nonprofit 501(c)(3) agency that provides information about RLS; helps develop support groups; supports research to find better treatments and, eventually, a definitive cure; educates physicians and patients about RLS; and publishes a quarterly newsletter known as NightWalkers.

Snoring and sleep apnea--equipment manufacturers and other commercial sites

Manufacturers of equipment used in diagnosis and treatment have begun to present their wares and providers of services to promote their capabilities on the web. This information can be helpful to patients when selecting equipment and supplies for treatment and to get information to resolve technical or supply problems.

  • The manufacturer of the Breathe-Right nasal strips, CNS, Inc. has published online A Medical Perspective: Snoring, Causes and Treatments a useful booklet on snoring. Written by several recognized authorities (Meir Kryger, MD, Martin Scharf, PhD, Kingman Strohl, MD, and Daniel Cohen, MD) and professionally illustrated. Excellent explanation and overview of snoring. Appropriately alerts people who snore about sleep apnea and recommends Phantom of the Night for additional reading.
  • ResMed is the manufacturer of the Sullivan line of apnea and other respiratory care treatment systems. Colin Sullivan, the inventor of the CPAP tratment method, is affiliated with the company. Offerings include information for professionals; sleep apnea products; an overview of sleep apnea and related information for patients. ResMed Home Page
  • Respironics has been manufacturing nasal continuous positive airway pressure (CPAP) systems for the treatment of obstructive sleep apnea for over a decade. They also developed the first bi-level therapy devices, BiPAP®. The Respironics Home Page covers their products and includes a FAQ, bibliographies, software and video downloads, and an excellent, informative newsletter, Daybreak.
  • SleepNet Corporation home page is at www.dpap.com/.
  • Research tools and resources for the professional or patient

    Overview of sleep apnea for health professionals

    A comprehensive medical overview of sleep apnea by a selected panel of experts has been published by the NIH. Sleep Apnea: Is Your Patient at Risk?

    The MEDLINE Internet Grateful Med search tool

    The new Internet Grateful Med, a program developed by the U.S. National Library of Medicine (NLM) for searching in MEDLARS. MEDLINE Internet Grateful Med search tool is a great source for the seriously interested patient as well as the professional who needs to check research findings.

    I was privileged to help test the first versions of this program and it is a very helpful tool for locating articles in the health field. I recall doing a MEDLINE search many years ago; I sat with a librarian and then waited weeks to get a huge printout. Using Grateful Med, I do searches by myself in minutes, and it is fun to get information quickly when I need it. There are charges for searches and you can order copies of articles for a fee.

    To use MEDLARS service online you will need a credit card and a web browser ( Netscape 2.0 or higher or Internet Explorer) supporting encryption to safeguard these transactions. You will receive a user ID code and password immediately. International users are urged to contact their international MEDLARS centers for passwords, assistance, training, and user support services.

    SLEEP-L, a moderated list for professionals only

    As professionals, you may need to call on a wider professional community, say for help with a specific technical or clinical problem. You may be eligible to join SLEEP-L, [email protected] a moderated, membership mail list joining sleep professionals internationally.

    To request permission to participate, send email to the moderator, Todd Arnedt {mailto:[email protected]}

    DENTAL-SLEEP mailing list for dental professionals

    DENTAL-SLEEP is an unmoderated discussion list for the exclusive use of dentists and other health professionals who are interested in dentistry's role in the recognition and treatment of sleep-breathing disorders. Discussions can be on the subject of oral appliance therapy as well as the oral surgical and otolaryngological surgical approaches to the treatment of primary snoring and obstructive sleep apnea as well as other medical methods of treatment. It is not an open forum for patients to ask question, discuss symptoms or treatment options. To join, send email to [email protected] and make your first line of text "SUBSCRIBE DENTAL-SLEEP Firstname Lastname Degree"

    Behavioral Sleep Medicine mailing list for professionals (PhD)

    The ASDA has approved the formation of a special section on PhD Issues in Sleep Medicine. An Email-Bulletin Board is dedicated to discussion pertaining to behavioral treatment and research within sleep, and training and certification issues for those interested in Behavioral Sleep Medicine. If you are interested in joining the email network, please send a note with your email address to Michael Perlis. [email protected].

    New Abstracts and Papers in Sleep: NAPS

    Here is a real help for the clinician, researcher, or patient seeking to keep current in sleep-related research. Provided as a free service by the Sleep Home Pages, NAPS sends out a personalized e-mail alert of new information. You indicate the topics of interest and each Monday you receive the citations in areas you have chosen. You can read the abstracts. To sign up, or to learn more go to the NAPS site. There you will find convenient ways to search their data base of abstracts.

    BiblioSleep (search for sleep-related papers)

    Bibliographic references to all sleep and sleep-related professional publications from 1994 to present, and with earlier years being added. Search by author, category, or keyword in the time period you select. Why go to a library when you can answer your questions about sleep from home? BiblioSleep {http://www.websciences.org/bibliosleep/naps/default.html}

    By mutual agreement, some material in this article appeared in ADVANCE for Respiratory Therapists (February, 1996)


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