Someone recently asked me to put together a list of the ALS message board sites that I was aware of. I did so and added some editorial comments which are my personal opinions only. I share them here in case they (probably the sites more than my opinions) may be helpful in any way.
Yahoo Living with ALS Message Board
http://health.groups.yahoo.com/group/living-with-als/
This seems to be a good, reliable source for patient services information. All postings are screened and whoever does the screenings keeps things on track well. It is a simply threaded message board that does its job nicely with an active core of participants. If I were looking for help with the practicalities of dealing with ALS, this would be the place.
ALSTDI forum
http://www.als.net/forum/
This has the most active research board that I have seen, and it has some professional adult supervision from ALSTDI in the research area which is very helpful. Living with ALS area is good, too, but not as busy and active as Yahoo LWA.
Neurotalk (Braintalk 2)
http://neurotalk.psychcentral.com/forumdisplay.php?f=6
This one is a potpourri ALS site and appears to have more lurkers than contributors, but it does contain some interesting information.
PatientsLikeMe
http://www.patientslikeme.com/forum
The strength of this site is the empowerment that it gives PALS to self-report their medical data. It has a “myspace” quality about it. A forum area is included and is quite active but appears to be unmoderated.
ALSforums
www.alsforums.com
This is highly moderated and used to be very Canadian in content and focus. More recently it includes much more of a North American focus.
ALSA Virtual Advocacy Community
http://als.clinicahealth.com/
Right now this is a very flexible site... so flexible that it’s hard for me to follow threads and comments. It is not moderated by ALSA and so far, ALSA has not offered leadership. It could be the premier site for advocacy issues and could help engage and energize people interested in advocacy, if only ALSA were active here.
MDA Chats
http://www.mda.org/chat/calendar.html
The MDA used to have a nice ALS message board, but they seem to have converted completely to the chat medium. I have not participated in one of those in years, and quite honestly, when I was helping with caregiving, the last thing in the world I wanted was a scheduled anything.
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As hard as it may be to believe, I think that 10 years ago with much more archaic technology, the online content was better and more focused for people dealing with ALS. The old P* message board was moderated and active and the place to go for information. To this day, the greatness of the PALS who helped others there amazes me. The other tool that we had then was the old ALS Digest. That was the most archaic technology of all, but the gentleman who assembled and distributed it made it a global help for people dealing with ALS and seeking answers. The human leadership made all the difference.
My personal conclusion is that content trumps the sophistication and complexity of the technology every time. Content +leadership + focus on a simple information-sharing site are much more important that a blog-a-rama-message-trackback-mypage site that has no focus and direction.
Here would be my dream world (short of having a one-stop-shop e-community)–
Let each existing site have its forte. Then have leadership from ALSA and ALSTDI or MDA and ExtraHands, etc. be active on those sites. If somebody has a problem with the clinic in Fargo, surely someone from ALSA or the MDA can help them get to the right help (or at least acknowledge the beef respectfully). If somebody wonders if Medicare is giving them the runaround, surely somebody with professional experience and responsibility from one of these organizations can steer him or her in the right direction, if even to a chapter staff member. If somebody in Montana wonders how to change state rules regarding parking privileges for the disabled, surely somebody from ALSA Advocacy can help. If somebody knows an elderly PALS in Waterloo who could use a ride to church, maybe ExtraHands or ALSA can help to make that happen. NFPs can reach out to your people rather than asking your people to come to you all the time! Other businesses would love the opportunity to do their jobs to serve people in an efficient and public manner that would also help hundreds of others simultaneously.
We recently saw an ALSA chapter employee post on the Yahoo LWA board asking for input to help a patient, and the board members embraced the request and provided lots of helpful information. These media are two-way streets that can help both PALS/CALS and the nfps.
Finally...
If somebody is offering constructive criticism on a Westin Hotel on travel message boards, you can bet a responsible, prompt response will be given on the board by Starwood... either fixing the problem or explaining the situation.
If somebody is offering constructive criticism on a Hilton Hotel on travel message boards, the other travelers either pile on or try to explain away the problem for Hilton.
Which is more effective?
I rest my case.