Re: NIH Study
a_weisman_at_yahoo.com
Date: 01/09/05
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Date: 9 Jan 2005 11:50:58 -0800
GregGerber@hotmail.com wrote:
> Rita, the topics are important and relevant and I have said so myself
> and discuss these issues and ask these questions on my own turf,
> Weisman or not, but it is difficult to go forward with a real
> discussion of these issues on sci.med when so much aggressive insult
is
> involved. My $02.
Why is it difficult? Your feelings are hurt? LOL
Of course it doesn't seem to occur to you when you lash out at someone
for something you perceive as less than brilliant, as you did to Zip
zip just recently.
And your attacks on me, your lectures about my behavior, well, if I
cared, they'd be just as hurtful.
I just find that they are meaningless and try to parse all the nonsense
looking for substance worthy of discussion, in the meantime responding
to the CONSTANT attacks on me when I choose to do so.
>Also just to be clear I agree it is up to the
> leadership to have more vision, but there was a collective failure of
> vision.
Greg when a few people arrogantly claim power to themselves, engage in
nothing like consensus building, persuasion, discussion or debate, how
can it be described as "collective"?
This is how it has always been in Lymeland, don't you see that? If not
then the knowledge gap as to Lyme history is YOURS.
See none of the organizations have ever tried to build a constituency,
they have assumed control, arrogated power to themselves and then
jealously guarded it. Attempts to build something else have led to
divisive and destructive turf battles. While the study was going on and
the results announced the karen and the pat were engaged in a years
long battle for control of the land of the misfit Lymies heedless of
the consequences to the very cause they claimed to be trying to serve.
Each one thinks they know best. Since they are actually insecure,
inexperienced, unsophisticated and incompetent, they are threatened
rather than strengthened by input; critique is viewed as criticism; ego
and self aggrandizement and self congratulations as well as a sense of
ultimate righteousness stand in the way of acknowledging mistakes much
less accepting blame which is important because it obstructs the
learning process. All of them are nowhere on the learning curve because
their egos prevent the necessary self reflection. There is no
professionalism and though they are volunteers, professionalism is
still needed. So is a quality assurance process, an internal auditing.
Instead the idea that this is all "grassroots" is celebrated, but the
truth is that it is NOT "grassroots" it is simply amateurish and
disorganized. Everything is ad hoc. There is no delegation of
responsibility for fear that someone else will get credit. The response
to failure it either to declare it a success or to plead hard work and
good intentions and then accuse the accusers of not having a plan of
their own--the very plans they refused to listen to in the first place.
But you're looking for some broader explanation? You're blithely
stating that it is a "collective failure" when the truth is that it is
and always was and still remains a failure to act collectively.
Dictatorships and this is what we have, ultimately fail for a lack of
vision and that is because they are by nature insular, ideas are
incestuous and come from the smallest pool only.
Yet you look for some broader explanation? Some broader indictment of
"the system"; the relationships between government, academia, and
disease advocates? But that is belied by the fact that broader problems
would (and do) inevitably affect other disease advocates in the same
way.
And sure there are some broader problems but the Lyme specific problems
begin with the failure of leadership, the basic fundamental failure of
the self declared "leaders" to act like leaders, the insularity, the
secrecy, the refusal to build coalitions within their own communities.
Even LDA in their attempts to build a national network have achieved
pathetically little in that effort. Five groups, total. A couple of
them functionally defunct. A couple of them exist mostly on paper. And
no idependence, just wholly owned subsidiaries.
And that is because the lda is a cult of personality of "the pat."
You have subservient sycophants like Baghdad Phyllis who are ready
when the pat has a bowel movement to declare it a work of art!
Rather than coalition building within Lymeland it has been nothing but
turf wars, divisiness, distrust. Has there ever been a real effort to
work together towards anything? And by that I don't mean the
"opportunity" to become a possession or protectorate of "the pat" -- I
mean true partnerships?
Join or be vanquished, well that is NOT coaltion building.
Action alerts, execute them without question is dictatorship NOT
leadership. There is no sense of informing people, explaining to them,
discussing, debating, seeking, sincerely seeking input and ideas,
delegating authority to others. There is only top down dictatorship.
And that's the way it has always been.
Why not start something ourselves? Well first, it is a little hard when
such efforts have always been seen as threatening and the entrenched
leaders work actively to undercut such efforts and there is along
history of that. It is a little hard to ask someone for money for your
own organization when they say "Well if it is such a big problem, isn't
there already something" because what do you answer, "Well yes but
they're incompetent and pursuing all the wrong objectives in all the
wrong ways.." because before you're halfway through that explanation
the person has closed their checkbooks and moved on dot org to
something else.
Why have we built the wrong relationships with others? Well why haven't
we even been able to build the right relationships with ourselves?
First clean your own house is the obvious answer.
But still you're insistent that there has to be some bigger issue?
> When a failure of vision is so overwhelming attacking
> individual people (even if they are the leaders) just scratches the
> surface;
No your analysis is entirely wrong. You're hearing hoofbeats, looking
for zebras when you're at a horse ranch.
The problem begins with the "leadership" and the fact that there IS NO
COLLECTIVE and that is the fault of the leadership itself.
It isn't scratching the surface; it IS the depth of the problem.
> the reasons are deeper and more endemic and we all need to
> soul-search as a community, not just as Lyme patients but the broader
> community of patients and people who live in this country.
Your looking for a forest and ignoring the trees.
Yes there are problems with THE SYSTEM writ large. Unhealthy conflicted
relationships between private industry and government and academia.
Corruption large and small. Government of the corporations by the
corporations and for the corporations. Yes that is all true.
But it ignores the problems that are specific to this community.
And those problems begin with the leadership.
They begin with angry people who have been treated badly being mad as
hell and intent on not taking it anymore but being unable to look
beyond their anger to how to be effective in achieving their goals. In
fact it goes to the lack of a coherent idea what the goals are so there
is no hope of achieving them. Being RIGHT and RIGHTEOUS isn't enough.
Having a just cause isn't enough.
To me it is staggering that your own lack of vision prevents you from
seeing this. It is so obvious.
> How can
> something get so skewed and go so wrong?
ANGRY and RIGHTEOUS doesn't equal COHERENT AND EFFECTIVE.
Grassroots=amateur hour
> What is the matter with
> science and our government agencies, and our collective relationships
> with them? Is it just Lyme leadership that had a failure of vision,
or
> did they fall prey to the broader vision failure we have as
Americans,
> that plagues us still?
So why isn't every disease advocacy group equally screwed greg?
>If we don't go deeper will we be victimized
> again?
Yes again and again and again and each time the "leaders" eschew blame
and refuse to learn we will repeat the same mistakes. It is like
groundhog day.
> These are complex issues and to lay the blame at the feet of
> the Lyme leadership out of context with everything else is still to
> have just a superficial understanding of what went down. I'll say no
> more. GG
It is your analysis that is superficial; in your attempt to find some
greater cause you are ignoring the obvious cause.
AND COULD YOU PLEASE PRETTY PRETTY PLEASE DEAR GREG DO US A FAVOR AND
PROVIDE US WITH THE CONGRESSIONAL LANGUAGE YOU SAY WAS SOME SORT OF
PATIENT CRAFTED MANDATE ARISING FROM THE KENNEDY HEARINGS AND LEADING
TO THE NIH STUDY
AND
PROVIDE US WITH THE SUNY SB PROPOSAL?
I would really appreciate it if you would so kindly acede to this
request, be forever in your debt, sing your praises to the skys for
having provided it, thank you a million times now in advance and
thereafter.
Was that nice enough? Let me know what else it would take greg.
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