Tuesday, July 20, 2010

Poor Man's Guide To ALS Support Message Boards

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


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. The tone is polite and pleasant. If I were looking for help with the practicalities of dealing with ALS, this would be the first place. Effective trumps high-tech every time.

ALSTDI 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. Rob Goldstein of ALS TDI fields questions for their staff. Relatively few people actually participate actively on this board, but hundreds lurk daily looking for the next big thing.



The strength of this site is the empowerment that it gives PALS to self-report their medical data. The forum area is not highly moderated (but there are loose rules that are enforced). It can be a good source of information for those exploring off-label or unapproved treatments. One also has to be aware that opinions can run high there with proponents and opponents of the unproven.



This is highly moderated and used to be very Canadian in content and focus. More recently it has attracted many more participants globally. It's a site that more people seem to be finding, and critical mass is important for any message board to be effective. It now has the critical mass.

MDA Communities


There are a lot of tools available to people wanting to set up an online presence. The ALS forum area just doesn't seem to have enough critical mass to be the most effective source of information.

ALSA Virtual Advocacy Community


Be aware that ALSA staff members do not participate on this site. Many simple questions on that site go unanswered. Traffic appears to be light and it's unfortunate that it can allow patients and others to twist in the wind waiting for some kind of response from someone.

There are many other sites that can be of help to those trying to deal with ALS. The list above only includes message boards where people can post questions and receive peer responses.

Most ALS organizations have Facebook presences. Until now, those are mostly used for fundraising purposes.

As ALS organizations learn how to use social media to interact more with patients and other constituents, we hope that we can expect more kinds of patient help (both from organizations and from peers) to come closer to where it is easiest for the patients to interact -- online.

And don't forget, as the classic New Yorker cartoon taught us with two dogs at the computer, on the internet, they don't know you're a dog.

If anyone has other thoughts, please chime in. The comments area below is open for business.

Sunday, July 4, 2010

71 Years Ago Today

Lou Gehrig gave us a lesson in grace and courage, and he gave a terrible disease a name.