Thursday, April 16, 2009

MS on the Internet

Having a chronic disease like MS sucks in every possible way, and I can't imagine how isolated and underinformed patients must have felt before the advent of the Internet. The World Wide Web is a vital resource for information about the disease, and is also a place to find virtual communities of people sharing the mind frakking experiences that go hand-in-hand with living with chronic illness. As sympathetic and well meaning as our healthy friends and family may be, they simply can't understand the emotional and physical toll taken by MS, and the Web provides the opportunity to reach out and "talk" to other MS patients. I've found that this has made all the difference in making daily life with MS bearable.

Here's a list of websites that I've found invaluable since I was diagnosed. I'll start with a list of websites that provide reliable information about multiple sclerosis, its treatments, MS research news, and programs designed to help MS patients.

  • The Accelerated Cure Project's MS News Page-The Accelerated Cure Project is a fantastic organization dedicated to speeding up the time it takes between discoveries made in the lab and actual treatments given to patients. This page provides links to important news about multiple sclerosis, along with some commentary. The site was down for several months, but now it's back, and I'm glad.
  • MS Views and News-this site provides links to all things MS, and is updated frequently. It's a great place to keep up with breaking news, and I recommend signing up for their weekly newsletter, which provides a synopsis of the significant developments in the MS world from the previous week.
  • Medical News Today-this is a general medical news site, but if you register you can customize it to reflect on your particular interests. I have it set up to give me news on multiple sclerosis, and stem cells. The site also provides e-mail updates on the latest news on your chosen topics.
  • The Multiple Sclerosis Resource Center-this comprehensive site maintains separate pages for MS news, MS research news, and stem cell news. Located in Great Britain, the MSRC also provides many services for British MS patients.
  • The Consortium of Multiple Sclerosis Centers-this site is geared towards MS healthcare providers, but I've found it can provide valuable information for patients as well. It's also interesting to get some insight into looking at MS from the healthcare provider’s perspective.
  • The National Multiple Sclerosis Society-the NMSS website is extremely deep, and provides links and info on topics ranging from MS clinical trials to MS news to MS political activism to specific NMSS patient programs. The site also has informational videos, and topics customized for patients at different disease stages.
  • The Multiple Sclerosis Association of America-the MSAA offers some outstanding programs for MS patients, including a program that provides free mobility products, personal use products, and cooling garments to MS patients in financial need. In cases of insurance denials or non-insured individuals, MSAA can also assist with payment for a diagnostic MRI. The Association also provides MS life coaching services, a toll-free MS helpline, and reassurance calls. All in all, an extremely valuable resource.
  • Multiple Sclerosis Society of Canada-for Canadian MS patients, this site provides viable information regarding MS, including sections on living with MS, MS treatments, and MS research. (Added info by blog reader Weeble: I might add that the Canadian MS Society page has a feature called "Ask the Expert". This is an opportunity to ask a neuro a certain question about the disease.)
  • MS Neuro Ratings-this site allows MS patients to post reviews of their neurologists. Obviously, a site like this requires lots of user participation in order to remain current and accurate, so I'd urge all patients to stop here and write a quick review of their doctor. This site could become a very valuable resource for people struggling to find the right physician.

In addition to sites focused on MS news and research, there are many online communities in which MS patients can meet and interact with each other. Many of these sites have both bulletin boards and chat rooms, and each tends to have their own individual personality. Please note, this is by no means in a comprehensive list of all MS communities on the net, just the ones whose doorways I tend to darken.

  • MSWorld-I believe this is the largest online MS community. It has thousands of members and many different boards geared towards the varied aspects of life with multiple sclerosis. It is home to the only board I know of devoted to primary progressive and secondary progressive MS. This site is a good place to start for newly diagnosed patients, simply because of the size of its population and a number of topics it covers. Unfortunately, the site no longer allows the posting of direct Internet links, and doesn't allow members to send private messages to each other, which makes it difficult to form bonds with other members. The site is also heavily moderated, so that messages posted do not instantly appear on the board, but must first meet the moderators’ approval.
  • ThisisMS-this is a great site for MS research wonks. Lots of very smart people post here, and the site is more concerned with the latest developments in MS news and research than with giving its members the warm fuzzies. ThisisMS has individual boards for most of the current MS treatments, and maintains a running list of all MS drugs in the research pipeline. Don't get me wrong, there are some very supportive members on this site, but the conversations tend more towards research and science and less towards hand holding...
  • BrainTalk-this is a smaller MS community, with a nice mix of members offering general support and information about living with MS.
  • NeuroTalk- similar to BrainTalk, both in size of membership and in the scope of the discussions it hosts. A generally friendly place to find MS information and support.
  • MS Refugees-in all honesty, I don't frequent this site that much, but it does seem to be a supportive community and a good source of information.
  • MS Kurmudgeons Korner-this is a private, members only online community, that declares itself a "rainbow and unicorn free zone". It's for people who don't sugarcoat the fact that having MS completely sucks, but who can laugh their asses off in spite of it. I'm one of the moderators of this site, which is an extremely close knit group of just over 100 people from all over the world. Unlike the public sites listed above, this site cannot be accessed by search engines or Web portals, so anything that is said at MSKK stays at MSKK. The site maintains a very strict privacy policy, further ensuring that its members can feel safe discussing pretty much anything. If you think you'd like to join, read to the guidelines and check the site out. We're always looking for interesting folks to be part of the community...

As I said, this is by no means a comprehensive list of MS sites on the web. These are simply the sites in my arsenal, which I feel provide solid information and/or friendly support. Especially for those who find themselves on disability, having MS can be an isolating experience, and I urge those who haven't already done so to check out some of the online communities listed above. It helps tremendously to know that you are not alone in the struggle.


  1. Very helpful post Marc. I might add that the Canadian MS Society page has a feature called "Ask the Expert". This is an opportunity to ask a neuro a certain question about the disease.

    You're doing such a great service with this blog. Keep up the good work.

  2. Dittos, weeble. I always learn something new from wheelchairkamikaze.

  3. Mark, the Flash widget in your sidebar (titled "Wheelchair Kamikaze Photos (shot with wheelchair mounted camera) is overlaying the text in the main column on my setup.

  4. Please check out wrote under Mary in Vermont entitled Wheelchair repellant-my name for my shots which is about why I stay on treatment and why everyone should have a plan. Other stories I found very helpful to read in a BS free zone. It felt very cathartic to write our stories there.

  5. Katja, what set up are you using? I tested the site in both IE 7 and Firefox, and it seems to be working...

  6. WinXP SP3, Firefox 3.0.8, browser maximised, screen resolution 1366 x 768. It's related to Firefox sizing; if I ctrl-minus down to the point where I can't read the text any more, the flash image stays in its own column :-).

  7. Hello Mark! I stumbled (Oh that was bad) across your blog and just had to tell you how impressed I am with your writings, photography, and information.
    Kudos from CT.