Activist LKW wrote this in response to the problems created by so many things having been subsumed into CFS (which now seems to have been expanded to include fatigue from any cause, physical or psychological, and not only the original physically debilitating post-viral neurological condition described in the Incline Village outbreak). Certainly, sorting out the various causes and focusing research on only the post-viral version would be more helpful in research than those researchers who lump together "sudden onset" (i.e., viral) with "gradual onset" (i.e., more than likely psychological).
Rearranging all of the puzzle pieces
If you walked into a room and saw a pile of puzzle pieces on the floor,
most people's inclination would be to start sorting them, then reassembling
the puzzles. If, as you sorted, it quickly became apparent that multiple
puzzles were involved, you'd expand your space and start making piles,
matching like with like.
What I see with so many patients all over the world in this CFS, CFS/ME.,
CFIDS, ME/CFS and ME mess that now exists is a sort of desperate
clutching at anything/everything (ideas, names/terms/definitions) and then
interchanging them all, at will.....
To put it another way, it's like everyone is so desperate that they are
willing to latch on to anything/everything they can grab JUST IN CASE it turns out
to be important one day, or a small piece of their puzzle, or the answer....
And they never let go of anything ever again.
It's like they are taking the pieces of 20 puzzles all thrown together onto
the floor in a pile and are now trying to make random pieces of each fit
together, by golly, by hook or by crook - even if the colors are wrong or the edges
don't line up. They will smoosh and hammer and pound those pieces into a puzzle,
so help them! They WILL assemble a puzzle! It doesn't matter what the end
result looks like - it doesn't have to look like any of the originals on the box
covers or be pretty or depict a specific image or scene, or make sense or be neat
and clean with well-defined edges. Oh no...nothing so systematic or
These are desperate patients, without scientific backgrounds but perhaps
with brain damage, who are sick and tired of being sick and tired. And I oh, so,
get that. And more. But their approach is not bringing anything to fruition.
It's just making a bigger and more confused mess.
-->What they SHOULD be doing is seperating out the puzzle pieces by type
(individual puzzles, according to the picture on each box) and assembling
each seperately. Then viewing the results and determining what each still needs
to complete it.
Everything was thrown together 20 years ago, and the mess remains. ~I~ am
trying to help seperate it all out and start putting it back together properly. I have
always been a synergist. Instead of attacking me, or dismissing me, you
could start helping. Or if you're not willing to do that, then at least step aside and
give me--and others like me--room to work. Because we are trying to do something that
will benefit the masses.
And oh, yeah - let go of all of the the Lego and Matchbox and Barbie pieces
already, as they were just lying on the floor when the puzzle pieces were
dumped and so have no relevance. They don't go with the puzzles!!!!