This Is MS Multiple Sclerosis Knowledge & Support Community

I found an interesting announcement of a crowd-work conference:

http://socialcloud.aifb.uni-karlsruhe.d ... /Calls.php

Obviously, it is not a ms related conference, but addresses an interesting topic of problem solving in online communities.

Isn't that exactly what we are doing here? Working globally on how to deal with, get better, manage a serious condition? I wonder what is our strength, leverage here compared to big pharma guys behind microscopes? Is it the multitude of patients, motivation, communication or the willingness to guinea pigging ?

Pawel

To answer your question, Pawel: no, we are not croud-working. I will stick my neck right out and say that we are not solving MS in any way whatsoever. What we are doing is exchanging knowledge, ideas, coping strategies, etc. Sometimes all we can do is offer reassurance to someone who is bothered by an out-of-the-blue Dx of MS.

"Crowd-working" is not new. It is little more than could be done 20 years ago using Windows for Workgroups. It just has a fancy new name, and has attracted a small group of academics who want to become the experts in a "new" field. It also offers a chance for some unscrupulous employers to get a piece of work done without even hiring the normal contract staff.

As of tonight, the "workshop" had just 4 papers accepted for presentation - for the whole day. Go figure ...

Geoff

Well, obviously we will not pinpoint a root cause here and produce a nice academic paper. It is not how I meant it.

I mean that exchanging knowlede, ideas and coping strategies really makes a difference for a MS patient, specially when compared to such a patient's situation in say 80s. And I am sure this difference in many cases is measurable on EDSS. Even if Terry Wahls would be possible in 80s I am sure her audience would be much, much smaller then today. And her ideas made a difference for me (dairy out!) and for many others. Lowering sat fat intake was already there in 80s, but without internet I doubt I would know about it and it is helpful for me as well.

Moreover, I wouldn't underestimate the power of a community of thousands of desperate people sharing same problem.

BTW, what I just did in this post is leaving a reinforcement, positive trail, feedback for leaving out dairy and looking into TW or Jelinek/Swank approaches. That information might make a difference for other readers and encourage some of them to try it. Leaving positive feedback for strategies that work for patients resembles a little bit these "ant optimization algorithms" which is an interesting problem solving technique. Ok, I just want to say something more is going on than passive reading

Pawel

The Internet and the social fora make a remarkable difference.
The book titled the Starfish and the Spider from Brafman and Backstrom gives a good introduction.
The book Rethinking World Politics A Theory of Transnational Neopluralism from Philip Cerny is an intellectual book on complex global systems and cross-border networks.
I personally believe that there is a collective cognition developing beyond individual cognition
http://pespmc1.vub.ac.be/papers/distr.c ... mework.pdf
quote The implication for collective intentionality is that such a self-organizing agent
collective can develop “mental content” that is not reducible to individual cognitions.

I do not know what you would call it, but I think CCSVI got a big leg up due to the interest shown and actually provided to the medical community from this very website.

And do not underestimate the power of information sharing. I'd like to think that not only has Dr Sclafani taught us many things, there may even be a very small amount of knowledge and/or insight he may of gleamed from us.