APPENDIX A: SITE STRUCTURE
APPENDIX B: VISITOR STATISTICS
APPENDIX C: TESTIMONIALS
APPENDIX D: OTHER MS WEBSITES
APPENDIX E: DIRECTORS
The Multiple Sclerosis Information Trust is a charitable organisation that has been formed to run the website, All About Multiple Sclerosis (www.mult-sclerosis.org). This has been run since 1999 by Paul Jones, a person with MS, who has become an expert in the medical aspects of the disease. This gives the site a unique perspective and focus unavailable to physicians or to other websites. It provides the most comprehensive and up-to-date MS news gathering service on the Web and an extensive encyclopaedia of medical information, translated into plain English and written from the perspective of a person with MS. The website provides a detailed description of the disease and the latest information about MS medical research. It also addresses the personal and emotional issues involved in living with MS.
The overriding purpose of the site is to help people understand their disease and to provide news of forthcoming medical innovations. The information provided is not prescriptive but aims to help people with MS come to decisions based on accurate information combined with their own life situation.
The site has been growing in size and popularity since its inception in November 1999 and now enjoys around 3,500 unique visitors a week to its 4,000 pages. Detailed visitor statistics and a sample of the many testimonials that the site has received are to be found in the Appendices.
There is a heavy emphasis on medical accuracy and the site has been accepted by The Health On the Net Foundation (HON) and abides by the HON principles of medical accuracy. The site is in the process of recruiting the consultancy services of both a senior MS research neurologist and a senior MS research immunologist.
Objectives for the first year are:
So far the site has been run without funding. The not inconsiderable costs have been met by Paul Jones. However this source of funding is exhausted and the site has grown to the extent that it needs a full time editor. As a result, the Multiple Sclerosis Information Trust needs to raise funds in order to continue. Budget requirements and cash flow estimates are included in a separate document.
All About Multiple Sclerosis is divided into several discrete sections as follows:
News All About Multiple Sclerosis is acknowledged to have the most comprehensive Multiple Sclerosis news gathering service on the Internet. The news archive goes back to December 1998 and around 50 new articles are added each week. A local search engine indexes these articles to help visitors find stories relating to particular sub-topics. The subjects covered by the news service include medical research, political issues and human interest stories.
Explaining Multiple Sclerosis This section contains several long essays that deal with many multiple sclerosis issues including the current understanding of what the disease is, how it operates, what the symptoms are, getting a diagnosis, what the prognosis might be, what treatments are available and general statistics about MS. The essays are cross-referenced into the Encyclopaedia via hypertext links.
Multiple Sclerosis Encyclopaedia This encyclopaedia will contain at least 750 articles that explain multiple sclerosis terminology. These divide up into neurological terms, immunological terms, symptoms, treatments and acronyms. There are many MS glossaries on the internet but this encyclopaedia goes into much more detail than any other and provides hypertext links to respected medical sites so that the visitor can find out more. Each description is written in plain English and cross-references other parts of the encyclopaedia via hypertext links. The encyclopaedia is currently 40% complete. Articles are updated as new information is learned.
Personal Experiences This section has a number of well-written essays about people's personal experiences with the disease. They describe how MS has affected people with all the major forms of the disease. They describe onset, diagnosis and coming to terms with MS. Currently, there are four essays on the site and more have been commissioned. Many users have commented on the usefulness of this in coming to terms with their diagnosis.
Internet Resources All About Multiple Sclerosis has huge number of categorised, commented and rated links to other pertinent web sites. There are 17 categories that range from MS charity sites and medical resources to personal sites by other people with MS.
Multiple Sclerosis Poetry and Prose These are by people with MS and most are about MS. Some of these are very moving but there is little attempt to control the quality of the poems - this is a corner of the web where people with MS can express their feelings through the written word.
Famous People with Multiple Sclerosis This is a comprehensive list of celebrities and high-achievers who have the disease. It is very much a sideline but is extremely popular.
All About Multiple Sclerosis uses two Web Tracking packages to monitor activity on the site - Nedstad Basic and SuperStats. The former is a free tracker and the latter a paid subscription service. There are nearly 4,000 pages on the site, 12 of which are monitored by Nedstad and 34 by SuperStats.
Chart A.1: Entire Site - Daily unique visitors totalled by week (Superstats)
Chart A.2: All Monitored Pages - Daily Views Totalled by Week (Superstats)
Chart A3: Main page - Weekly views (Nedstad)
Chart A4: Nedstad Monitored Pages - Weekly Views
These are examples of several hundred testimonials that the site has received.
National Multiple Sclerosis Society of America
Multiple Sclerosis International Federation
The Multiple Sclerosis Society of Great Britain and
MS Research Trust
MedSupport FSF International
Consortium of Multiple Sclerosis Centers
Computer Literate Advocates for Multiple Sclerosis
National Institute of Neurological Disorders and
Paul Jones is 43 years old and was educated at Bristol University. He was diagnosed with MS in March 1999, whilst working as a senior systems architect for ING-Barings. His personal experience with the difficulties of finding comprehensive, up-to-date and understandable information about the disease led him to set up the web site.