What Patients Can Do in MS Research...
If (as has been said)
the ms problem were like a large crossword
puzzle, and experts all over the world were
working on filling it in,
what could the patients do? What can I do?
I mean with a huge amount of effort they might
get one word
in the crossword, but more likely, they could work on other things.
Fundraising. Documenting the crossword effort...Supporting the researchers
...or that's the traditional thinking.
In a recent issue of wired magazine there was a great
cases where patients with rare diseases were instrumental in solving them.
medical researchers don't feel threatened when an Architect, or Software
starts learning a problem and trying to solve it. A few do. But the truth
generalized problem solving is a craft that crosses disciplines. People from
fields will look at the problem in a different way, and deal with the complexity
in different ways...
Most of the patients who helped find a cure did
so by bringing together different
researchers work, not by doing lab work themselves.
Since MS may be a problem that takes decades to
solve, I propose creating detailed
illustrated web resources for learning the problem, manipulating it, and
mapping the research effort...
I wish there was a general systems theory problem
graphing tool, so problems in
any discipline could be represented in a standard format. I'll look, it probably
I propose that MS patient groups get together
with patient groups of other diseases
and create this standard way of representing biological problems to laymen.
(if it doesn't already exist)
I propose that a general science of group problem
solving on the web be evolved and handed on to next generations...I mean
some of these problems will be around for centuries. It would be cool if
a person could quickly look at the little problem graph, and
learn it, across systems.
But I am showing my background in software. Just
manipulating and representing the
problem better won't do fundamental research. Eventually questions come up
and the lab comes into it. Well once the problem is well mapped all new research
can be documented on that tree of knowledge,
and new questions generated...
More importantly the web offers patients a chance
to join in on the research effort.
There are areas like vitamin D, water cure, and diet, that do not involve
the pharmeceutical companies. Web systems allowing patients to log in and
take on a research task, are a good idea. While they would only create anecdotal
evidence, it would be bulk anecdotal evidence along standard lines. Such
evidence could be organized and graphed and if it was done in large enough
numbers, may gain some power.
The bottom line is that patients don't care if
the cure comes from anecdotal or scientific sources. They just want it to