by Marjorie Lazoff, MD
Medical Computing Today
accepted for publication in Medical Computing Today November 1997
Originally published in edited form November 1997 in Medical Software Reviews.
Online Resources -
Patient Ed -
Lists of Lists
In contrast to acute bacterial meningitis, which has inspired relatively
few quality Web sites, multiple sclerosis (MS) is far more authoritatively
represented on line. The most impressive difference between meningitis and
MS Web activities lies in the variety and competence of online patient
resources, partly derived from its numerous international, national and
grass roots organization sites. Also unlike meningitis, there are MS sites
sponsored by pharmaceutical companies to promote their proprietary
products. These sites will be of limited value to patients, unless
companies change their marketing ploy and either educate about all
competing treatment options without bias, or avoid mentioning MS treatment
altogether. Overall, due at least in part to the nature of the patients
afflicted and its position at the crossroads of immunology, virology, and
neuropsychology research, MS has a solid presence on the Web.
Multiple sclerosis is the most common debilitating illness affecting young adults. Pathologically it presents as an autoimmune disease that destroys patches of nerve-insulating myelin throughout the central nervous system. It has a complex epidemiology and polygenetic pattern of inheritance that hints at an environmental, hormonal, and/or viral trigger affecting women more often than men and Caucasians more than other races. In a given patient, MS may be a straightforward or challenging diagnosis and may follow a relentless or unpredictable course, usually one with a high likelihood of intrusive sensory, cerebellar, neuropsychiatric, motor, and autonomic symptoms worsening over years to decades. Amidst active research and an array of alternative medical therapies, the new FDA-approved beta interferons and Copaxone may slow disease progression and/or decrease the number of relapses in some patients, albeit at a great expense and with serious side effects. While MS does not usually affect life span, it
strongly influences the quality of life, through disability and the uncertainty of the prognosis.
An excellent didactic Web resource on MS is a series of article lectures at University of Utah's Multiple Sclerosis Tutorial, although the patient videos take forever to download and the references, while wonderfully organized with links to most abstracts, end in 1994. Other online texts are more
superficial and dated, such as the 1992 edition of Merck Manual's chapter on Multiple Sclerosis and Family Practice Handbook's Multiple Sclerosis. Medical students may appreciate Michigan State University's short neuropathology outline with gross anatomy slides on the inflammatory process of demyelinating syndromes.
PharmInfoNet provides a comparison of immunomodulation therapies, and The MGH Pain Center offers a case discussion on approach to shoulder pain in a patient with MS.
A Web favorite, Keith Johnson, MD, and J. Alex Becker's Whole Brain Atlas
illustrates various MRIs of any sagittal cut in a 30 year old pt with MS, and
references a year of MRI T2 weighted studies in a patient with chronic progressive MS. The prominence of MRI imaging in the diagnosis of MS makes this site especially
The National Multiple Sclerosis Society unabashedly proclaims it supports more MS research and serves more people with MS than
any national voluntary MS organization in the world. Site features include the well-maintained Breaking News, MS Info, an accurate but spotty patient resource available in six languages, and a developing section for health practitioners; excellent research updates and announcements; a listing of MS chapters, clinics and societies, and an unsatisfying Links resource. The free Information Resource Center and Library sounds like an automated Medline search, which would make a wonderful online feature.
England's International Federation of MS Societies (IFMSS) maintains a colorful animated Web site called The World of Multiple Sclerosis. The home page divides the site materials, but navigate instead from the Main Directory or Finding Your Way. Site strengths include a multiframed page linked to several dozen national MS societies, a section giving realistic clinical information and FAQs, and a searchable database
of publications and research activities. One hidden gem is Immunology in
Pictures, a fabulous step-by-step guided tour through a proposed immune-mediated mechanism of MS. All but the first of these publications from IFMSS
are on line, although not all are current.
The well-designed Consortium of Multiple Sclerosis Centers includes an annotated listing of member centers, and provides online patient registration with the North American Research Consortium on MS. I hope the unrestricted grant from a pharmaceutical company, which we are reminded about on every page, lets the site continue its development into Issues in MS, Research, and Reviews of MS Web sites, and fixes the occasional but distracting coding errors.
Those who enjoyed the 1992 film Lorenzo's Oil will be glad to know the Myelin Project is alive and well. The Project's goal is to expedite pragmatic research projects on myelin repair,
which affects a host of acquired and hereditary disorders. The Web site is understated and attractively designed, and includes biannual reports on the group's work and research support.
The International MS Support Foundation is a nonprofit organization created a year ago by Jean Sumption, a nurse with MS. Hers is a bright, active Web site full of information for physicians and patients. The site stretches the boundaries of scientific medicine and sometimes doesn't
credit authors or date its articles, but it's an ambitious and largely successful project, particularly the sections on Research, Medications, Medical Resources, and People with MS. The site also assists MS patients in activities of daily living (and computing!). Ignore Ms. Sumption's warning about the slow download time to view her watercolors; it's a relatively
short wait to enjoy her talent.
MS Foundation, Inc. was founded in 1986 by a woman with MS who wanted to share her successful experiences with
alternative therapies. The organization has since developed into a clearinghouse on both complementary and conventional MS health care. The site's strongest feature is Does the Doctor Make House Calls?, where e-mail questions directed at physicians and other health care professionals are publicly answered.
The National Institute of Neurological Disorders and Stroke's Multiple Sclerosis Research Highlights provides a well-written overview of MS, including a description of NINDS research projects on topics such as MS virus, immune cells, genetics, emerging treatments, drug trials, and methods for monitoring disease activity. The Multiple Sclerosis Society of Canada offers a promising Research in
Action newsletter, in addition to press-release research updates from
around the world. Not unexpectedly, the National Multiple Sclerosis Society
provides especially strong research updates. Indeed, most organizations and many labor of love sites include some information on clinical research, and a number of MS clinics (not included here) advertise their research efforts within largely promotional sites that address a
potentially worthwhile service.
The University of Brunel, Middlesex, UK, has gathered its 1980's research into the sociology and psychology of MS under The Brunel MS Register.
The major medical journals offer a number of worthy MS articles on line, but as abstracts rather than full-text. The sole exception is a Canadian study published in the June 1996 issue of the Lancet, which examines The evidence for a genetic basis in MS. See, too, JAMA's online abstract on MS genetics. For a more nurturing perspective, the October 1997 issue of Nature Medicine abstracts a study supporting the role of virus in the pathophysiology of MS.
One recently published BMJ editorial discusses Depression and suicide with MS, and two Archives of Neurology article abstracts discuss neuropsychiatric features and document the correlation of neuropsychological functioning with MRI.
Most ACP Journal Clubs are not publicly accessible, but several slipped through the cracks. Two critique articles on new treatment modalities published in the July 1995 issue of Neurology start with the FDA-approved Interferon beta-1b, which links to a commentary on glatiramer acetate (Copaxone, AKA Copolymer 1), a synthetic form of myelin basic protein. ACP also reviews the Austrian MS Group's promising results using immunoglobulin therapy as published this summer in the Lancet. Archives of Neurology also posts abstracts on MS therapies, including two that discuss side effects of Interferon therapy: thyroid and depression. Look, too, for a clinical trial on the anti-spasmotic drug Tizanidine and Desmopressin for management of nocturia. Finally, see an online BMJ editorial for an important perspective on
interferon therapy in MS.
Most of the best clinical articles on MS are published in major neurology and neuropsychiatry journals, which are not generously represented on line. However, a large number of abstracts on bench and clinical research can be found by entering "multiple sclerosis" on the search page of Brain.
Medscape, Helix and Medconnect offer no significant articles on MS. Avicenna has one of its typical Outlines in Clinical Medicine on multiple sclerosis. Physicians who register for MedEc Interactive may access Living with MS, an uneven review written by several well-known neurologists and published in Patient Care, January 1997.
An MS Listserv newsgroup created a Document Index that includes several posts by Catherine Britell, MD, an assistant professor in rehabilitation medicine at the University of Washington, on understanding and dealing with common MS problems, along with many other posts on a multitude of legal, research, medical, and, especially, personal issues. The posts here are more literate and thoughtful than most, and the page seems to be a valuable resource
even though it has not been updated in a year.
Harvard's Neurology Webforums contains dozens of neurology disorders, including a longstanding MS Archives; note the first few dozen posts are not functioning. The new MS menu has hundreds of messages posted over the past month, with the usual assortment of magical claims, exposed scandals, cries in the dark, shared comradeship, and silly flames that typify open Web discussions.
Kim Levinson's MSRevealed is an interesting and well designed labor of love site. One standout feature is a list of preformatted searches performed on hundreds of MS topics related to medicine, health, and holism. Although most searches are six to 12 months old, and at least one eliminated the source data of its abstracts, it's a surprisingly complete reference listing; there is also an option for users to request searches. Other special features include a list for those who wish to post anonymously, and access to a naturopathic doctor whose advice may not be in keeping with mainstream neurologists' care.
Jooly's Joint is another labor of love headed by Julie Howell, a young Englishwoman who has created a free Webpal service
for patients and families afflicted with MS.
Mediconsult.com offers a straightforward Web site of patient information on multiple sclerosis, including news updates, a link to MS research protocols advertising for participants, and medical Q&As from a group of well-credentialed
physicians, all tastefully separated from its online commercial partnerships and marketing. Healthtalk Interactive's MS Educational Network offers text and, if selected, simultaneous audio clips of physicians fielding questions and discussing treatments in a manner reminiscent of a radio interview.
Lists of Lists
Aapo Halko, a Helsinki woman with MS, has created a wonderful page, MS Crossroads. Included here are listings of research sites from around the world. MS Direct is a popular resource page created by Dean Sporleder. Look here for a link to a Disability list.
Chilterns Multiple Sclerosis Centre has an excellent but dated list of links, divided into categories, and MS WebRing has 47 sites, mostly personal home pages.
For a Medline search of articles published over the past 60 days, see PubMed's search of multiple sclerosis. A search of 23 online medical journals can be performed at Silverplatter's WebMedLit
by typing in the term "multiple sclerosis."
For Web resources, search "multiple sclerosis" (exclude "lateral" and "tuberous") on Neurosciences on the Internet. As noted last month, helpful resources for searching medical diseases are Sweden's Karolinska Institute Library, OHSU's CliniWeb, and England's OMNI.
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