Re: Slacktivism in inaction

On Jun 6, 1:57 pm, itsybitsy...@xxxxxxxxx wrote:

And, as I say, there really is a presumption of innocence, of pure
motives, that should apply here (but apparently doesn't in Lymeland,
or on the internet in general).

I’m not sure though as to whether I think it is so much innocence
(depending on how you are using the word) than maybe ignorance.

I am using the phrase the way most understand Anglo/American law to
apply it: "you are presumed innocent until proven guilty".

And here, I just mean that, in my opinion, there has way too much
accusation in Lymeland without anything like facts that would support
those accusations...from both sides.

And I am just saying that I am personally unwilling to accuse Lyme
slacktivists of being deliberate astroturfers unless I have some
indication of that. I don't.

That doesn't change the basic economics of the situation at all,
however. There, the intent really doesn't matter...the effect is the
same...whether unintentional or not.


Unwillingness? Even giving the benefit of the doubt…and I am trying to
be better about that, I really am…I have an easier time swallowing
ignorance than innocence, though.

But by pointing the finger at the IDSA...can anyone say,
realistically, that they haven't invited these questions directed at
themselves? And the irony of that situation, of course, is the
conflicts are much more apparent in the ILADS situation, arguably,
than the reverse.

Well, now, see, while I don’t agree with the IDSA’s stance either, I
don’t think that attacking them, or ‘Pallone’, or whomever the bad guy
of the week is with insults or threats is getting us anywhere. Rather
I think that public displays of anger, hostility, etc from patients/
‘slactivists’ don’t help the issue. It looks bad, of course that is
just in my opinion. It seems to lower the quality of the message,
makes ‘our’ side look ineffective, immature, and irrational. Finger
pointing without reference gives more ammo to the ‘other side’ and
does nothing for the patients, some of which just want their problems
to be taken seriously.

Agreed. And arguably, the latest slacktivist stunt...the Blumenthal
thing...has made the overall climate all that more diffcult for
patients.

But from a broader perspective, the views of rational perspectives are
being pushed aside.

But what I mean here, is that the LDA opened this discussion about
economic share by raising the antitrust issue (usually an economic,
market share type argument)...so...as far as I'm concerned...they are
now in no position to whine about the nature of these questions.
What's good for the goose, you know...


I don’t have a problem as much when finger pointing is referenced or
in a debate setting. With rational debate, point all the fingers you
want and have a point/counterpoint discussion. That being said, I know
that’s not the point or the problem here, because the point/
counterpoint conversations are rare at the activist level.

Yes. But what I was referencing there, of course, is the sic'ing of
the Conn AG on people.

I think that even the dimmest bulb in Lymeland has to understand that
this was a major escalation of tensions and the people at whom it was
aimed were probably not going to appreciate it too damn much.

(And who really knows? The classic problem within government these
days isn't overt, active conflicts of interest...it is in governmental
employees of a regulatory body then leaving and being rewarded by a
nice setup with whatever entity they were responsible for over-
seeing).

I don’t know enough about that to comment.

Well...what I am talking about there are sometimes specific ethics
laws that govern employment realtionships within government.
Sometimes, governmental employees can develop very friendly relations
with private interests that the governmental body deals
with...arguably to the detriment of taxpayer interests.

So, there are usually laws which prohibit certain categories of
employees from working for the private interest for a certain period
of time...trying to avoid a situation where the private interest later
rewards the employee for favors with a job after leaving government
service.

But...in an astroturfing situation, of course...there would be no
similar restriction. Now do you see the point? (Read between the
lines).



And do you see Phyllis (who used to post here fairly regularly) or
anyone from the LDA or CALDA responding to any of this? Perhaps she is
just too busy setting up her new website and organizing the seminar...
(both activities which probably rate high marks on a slacktivism
scale).

No, I don’t. But I am not currently willing to comment what I think
about that here. If you go look around LNE, you’ll find some
references as to why I am no longer in a state activist email list. I
just really don’t feel like going into what I feel about that today.

Why not? I'm not accusing anyone of anything at all. I'm just
commenting that where the person is elected...there is an obligation
to respond to constituent complaints. ("I pay your salary", etc, etc).

But see, in a slacktivist context, the usual attitude is to ignore the
"disgruntled" who don't quite appreciate the noble efforts of the all-
wise leadership. Usually a very clique-ish internal power structure
that doesn't like being asked questions.

I rasied hell here when the Blumenthal thing was announced. But said
that I would wait until it was concluded...and I distinctly recall
Phyllis saying that was good advice, or words to that effect. I am
just disappointed, but not surprised, that she hasn't been by...that's
all...

See, there is this notion among true slacktivists that what they, in
their infinite wisdom,  decide to do in our names...we should all be
eternally grateful for.

Well, but isn’t the definition above regarding slacktivism all about
self-gratification?

Not entirely, I don't think. But egos can dominate...and perhaps
emotional decisions based upon perceived affronts...("now they are
getting a taste of their own medicine").

I think people who really put themselves out there for their cause,
Jane Goodall and her gorillas, for example, aren’t looking for credit,
pity, gratification, don’t sigh and say “Look what I have done for
you…” or not let you around them if you question their views. People
who do for the greater good welcome point/counterpoint conversations
and always endeavor to better themselves and the work they do. They do
not believe that just because something has always been done a certain
way that there cannot be a better way, and do not keep doing the same
thing over and over expecting different results.

The staffer in the Pallone video is answerable to voters...he has to
sit there and take it...but the slacktivist leaders can just turn
their backs to criticism and sniffle about how much effort they expend
with so little gratitude ...

I didn’t see it, cause I cannot stream video here…so what was that
about? A staffer?

Ms. Smith goes to Pallone's office in NJ, (I guess)...and just berates
and browbeats and lectures a staffer for Rep. Pallone's failure to
jump through hoops when she said 'boo' (in re the tick advisory
committee nonsense. BTW...isn't that just about the alltime worst
cliche in government? "hey, I know, kids...let's form a COMMITTEE".
Who do you think the patient rep on the damn thing is supposed to be)?

She never lets the poor guy get a word in edgewise...just a really
nightmarish schoolmarmish browbeating. She has some toadies along who
interject "yeah, yeah", every once in awhile. Pallone made the mistake
of holding legislation (the damn tick committee thing)...until the
panel Blumenthal called for has revisited the IDSA Guidelines. That
wasn't near good enough for Ms. Smith...and she is apparently somewhat
peeved that Pallone didn't show to face her righteous indignation in
person.

Someone had videotaped the whole episode...apparently for later
posting on the internet. At the end, the camera focuses on the faces
of a couple of aides...the looks on their faces tells all.

Just awful. Embarrassing, and of course, it was applauded over at
LymeNUT.

It reminded me of Elvira Gulch when she comes to grab Toto.



...still, I think it is important to keep separate suspicions from
fact and not accuse anyone of misconduct without very good reasons for
doing so. (And that applies to both sides of the controversy).

What’s a ‘good reason’ for doing so?

Well, when you catch someone with their hand stuck in the cookie jar.
Otherwise, you should keep your suspicions to yourself...or report
what you know to relevant law enforcement authorities.

Just because alliances in this instance may prove profitable for some,
that doesn't necessarily mean that anything illegal or unethical has
occurred...and that applies to ALL involved.


Cause I think different people will have different opinions about what
is important or a good reason for doing so.

Judges in a Court of law are the only ones whose opinions really
matter on that score.

And notice...that does NOT mean that the opinions of the Conn AG
matter, either. They do not, in fact, until he gets a judge to agree.

People on the internet should, in my opinion, be much more careful
with the accusations they habitually and carelessly spray around.

It is obvious that I don’t
like to see someone possibly put off needed antibiotic treatment
because they met someone who said there are alternatives they can try
first, for the very low price of $x.xx
That bugs the *** out of me, especially when they prey on people on
message boards or have letter like MD behind their names.
Alternately, I suspect misconduct when certain doctors from the ‘other
side’ state things that completely are opposite to material they
themselves have published.

Well...my leaning is toward providing information...balanced
information...and letting open discussion take place...allowing people
to reach their own conclusions. I think there have been major mistakes
made in the patient advocacy area, by aligning too closely with
physicians of one particular perspective...and pushing patients to
those physicians. I think that the whole patient community would have
been much better served by keeping a healthy distance from the "LLMD"
crowd...if for nothing else, the sake of appearances.

It should be the interests of the patients that are paramount...and
NOT doctors. The obvious problem with the LDA/ILADS/Igenex arrangement
is that there are going to be conflicts of interest between these
entities at some point...and the leadership should NEVER have allowed
a close alliance with entities that had such obvious economic
interests in the outcomes of some of the debated issues.

When you see people being banned from forums because of their
viewpoints...(and not for breaking the rules)...then I have to assume
that the particular forum in question is doing so for a reason.

When you see people getting booted for simply asking questions...then
you have to wonder what people are afraid of.



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