Re: Re: sick building symposium conference convention in Los ...

[Guest guest]

Hi Advocate Now,

I am going to jump in here. I think you are incorrect with your

evaluation of people's concerns. I don't think people's concerns are because

of

paranoia - that they post information on a member's only chat board - and that

they have a desire to understand if their words may show up in a book

somewhere penned by one of the members.

I don't believe people view themselves as more important than they actually

are when they voice these concerns. I would like to think that people

are paying attention to what others post on this board as I find much of it

truly important. I learn a lot from this board.

I find it a bit dismissive on your part to present otherwise ie, that

people are considering themselves too self important if they think anyone reads

their posts and learns anything from them.

And I strongly disagree that good writers don't need help with writing. A

good writer does much investigating and pays much attention to the views,

wisdom, knowledge, documentation and experiences of others before they

write. Otherwise, their writings are most likely without merit.

So, I would have to disagree with you that people are over re-acting by

asking a couple of simple questions. I think people who come to this board

to learn from and share experiences with others on a members only chat

board, are well within their rights to ask what, if anything, you are intending

to do with information you glean from this board; particularly because some

of the members are in litigations or have insurance claims that impact

their lives. They sometimes post questions/answers that could adversely impact

their litigations and claims if misinterpreted by a writer in a

publication.

So, a two part question in regard to your future publishings and

Sickbuildings:

1. What, if anything are you intending to do with information that you

glean from this board; and

2. what, if anything, are you intending to do to protect the rights of

those who post here from being possibly misapplied or misinterpreted

adversely to the interest of the poster, in your future publishings?

I think we just need to set the ground rules here, and then move on.

Thanks,

Sharon K

In a message dated 2/5/2011 5:50:23 A.M. Pacific Standard Time,

advocate_now@... writes:

Sometimes it's helpful to step back and ask oneself how important one

really is in the scope of anything.

[Guest guest]

Hi Ann,

We don't mean to attack you. However, you appear to be in need of an

attitude adjustment in order to help you accurately relay info over this issue.

You write, " I am feeling quite upset about how my mere mention about this

book, one month after I'd already written about this, has been met with

fear and assumptions. "

You have hit a real nerve with me because what you are exhibiting is what

I know to be a main problem in advancing the understanding of this issue.

I don't think you are understanding. I would like to help you. It is not

the mere mention that you are writing a book. It is the attitude you are

exhibiting that the learned words of those injured are not relevant to

telling an accurate, scientific, story. You have to realize how hard many on

this board have fought for their rights and to have it understood that they

are more than just " anecdotal information " .

That is what is really bothering me of what you are writing, anyway. It's

concerning that what you are going to write may do more harm than good of

misquoting " peons frivolous anecdotal info " - based on the attitude what

you are posting, - NOT the info that you are writing a book.

We have even had to resort to making fun of people, physicians, etc, who

think that what people have to say should be dismissed as anecdotal

information,- in order to help get accurate info out. Here is an example:

_Unconfirmedsources.com_ (http://unconfirmedsources.com/?itemid=1648)

I don't think you realize who you are dealing with on this board and how

many years of valuable info is found here, as you demean us as anecdotal

info. WE, TOGETHER FROM SICKBUILDINGS caused a Federal GAO audit by sharing

info on this board that helped to change this issue on a Federal level.

Although my name is the only one mentioned below, I would not know one inth

of what I know if it weren't for KC and the Sunshine Band from SB,

shedding light on where transparency is needed in health policy. .

From Dr. Shoemaker's new book:

The arguments about health effects caused by exposure to the interior

environment of water-damaged buildings were brought to the U.S. Senate Health

Education Labor and Pension Committee (HELP) in January 2006, largely

through the tireless efforts of Sharon Kramer. She’d provided Senator Ted

Kennedy’

s office with an overwhelming amount of data to show that the current U.S.

government approach to mold illness was not only shortsighted and biased,

it was plain wrong. Senator Kennedy of HELP and Senator Jeffords of the

Senate Public Works Committee called for a legislative staff briefing, with

invitations provided to all Senate members. The meeting was held in the

Dirksen Building in January 2006. Thank goodness that it wasn’t held in the

Rayburn Building; (see Chapter 21, Tourists’ Guide to Moldy Buildings in DC).

Panelists were Marinkovich, MD; Chin Yang, PhD; Sherris, MD;

and Ritchie Shoemaker, MD, with Mrs. Kramer organizing and moderating the

briefing. The EPA, CDC and HHS were supposed to send speakers as well so

that an informed dialog could take place for the benefit of the Senate

legislative staffers, and therefore the U.S. citizens. The agencies cancelled

their appearance at the last minute. I can only imagine how some of the

staffers attending must have felt as they were bombarded with words like Type

III hypersensitivity, interleukin 13, eosinophils and innate immune

responses. That’s why there was a question-and-answer session, but it was

getting

close to 4:30 and the meeting broke up without much further discussion.

Understanding that (a) most elected officials aren’t comfortable with

potential threats to vested financial interests (in the case of water-damaged

buildings, those interests involve building ownership and the property and

liability insurance industries); and ( discussion of human health effects

due to exposure to water-damaged buildings exposes such threats to those

interests, it was curious that such a conference could be held at all. No

videos or minutes of the meeting were permitted to be taken so the Senate

staffers could feel comfortable to ask questions. I expected that there would

be

some sort of maneuver surrounding this scientific and political event, so

it was no surprise that government agencies, including the EPA, pulled

their representatives at the last minute, though no explanation was given.

However, I’m told that super-managers were in attendance. A few Senators

showed up; one staffer from Senator Jeffords’ (an Independent from Vermont)

office came in late and asked me for materials about the pathophysiology of

mold illness. I gave her a color copy of the Biotoxin Pathway, an effort

that distilled into one diagram information derived from thousands of hours

of research. She asked if there was anything more. Yes, there is, much

more.

The upshot of my talk on the reality of human illness from exposure to the

interior environment of water-damaged buildings (available as a free

download on _www.biotoxin.info_ (http://www.biotoxin.info/) ) was that several

Senate staffers, especially Senator Kennedy’s, wanted information about

illness that could be identified in areas of New Orleans, which had been hard

hit with catastrophic damages after flooding from Hurricanes Rita and Katrina

just four months before. Specifically, they wanted to know if human

illness caused by exposure to water-damaged buildings actually existed. And if

so, was it being covered up?

That area of enquiry subsequently led to a request from Senator Kennedy’s

office in October 2006 to the General Accountability Office for a review of

the Federal effort. Again, Sharon Kramer’s incredible effort was

instrumental in the GAO request that led in turn to the 2008 US GAO report that

completely destroyed the defense or government Nay-sayers’ credibility in

mold

illness issues. Thanks to Sharon and Senator Kennedy’s staff, the

longstanding idiotic arguments about mycotoxins alone being the problem from

WDB

have now been put to rest, with the exception of some really primitive defense

attorneys who don’t know that the old ACOEM-quoting defense and the old

AAAAI-quoting defense are a prescription for a loss in court "

So, I think you need to take a step back and realize that sometimes we see

ourselves, individually, as more important than we really are, and that

statement would include you.

Not looking to pick a fight - just trying to break thru a perception bias

you are exhibiting that I perceive to be a real threat to the greater issue

if you are writing a book on the subject.

Sharon K

[Guest guest]

Hi AN,

Thank you for emailing back. Its good to discuss things to clear up any

misperceptions. I don't have a problem with a book being written and

written of your personal story. That's not what concerns me.

I have a degree in marketing and so I tend to look at what concept is

being promoted. What concerns me are some statements made in your recent posts

that are indicative of a concept that has been a major problem in this

issue, i.e., that the information of those who have experienced this illness

she simply be considered " anecdotal information " .

Like Jeanine says, much of what you have posted lately is just plain rude.

Examples:

I don't put enough stock in lay people's opinions or experiences--except

my own.

" I am feeling quite upset about how my mere mention about this book, one

month after I'd already written about this, has been met with fear and

assumptions. "

" It is a fool's errand for any layperson to tell someone that their doctor

is wrong. "

I don't card about their......thoughts on the science and etc.

Sometimes it's helpful to step back and ask oneself how important one

really is in the scope of anything. Paranoia is a problem of proportion. If we

think we are more important than we are, we start to think people are

paying more attention to us than is actually true.

It's hard to understand unless you're a writer who does publish articles

and books, but the good ones certainly don't need help WITH WRITING.

I don't look for nuggets of wisdom in other people's posts because I know

that I have no trouble coming up with them. Okay?

I know you are new to the board and you don't know what some lay people on

that board have done or accomplished to change the issue. But, you are

making assumptions and putting statements on the board, based on these

assumptions that concern me of what concept will come thru in a book.

It is not cool to join a chat group where people, such as Jeanine, have

done more research that probably 99% of the " professionals " in this issue,

and then be dismissive of what they have shared on the board.

" NOTHING anybody has shared is important to me for this book. The only

thing that informs what I will be writing about is simply what I have learned

from the experts. "

I, personally, would put Jeanine up against any professional out there as

to what she knows of the science.

I can't tell you what to do, but if it were me, I would be putting an

apology out on that board explaining that I did not mean to be dismissive of

the members valuable information they have shared.

Or, I would put a message out saying that you have come to the realization

that maybe Sickbuildings is not the place for you to gather info from

those who work as professionals - that you will just contact them individually.

You NEED to do something, I think. Cuz you just made a whole lot of

people real nervous that you are going to write a book while portraying the

following concepts:

I don't put enough stock in lay people's opinions or experiences--except

my own.

MESSAGE: Although you have been fighting an uphill battle to get medical

help, your opinions and experiences are meaningless.

" I am feeling quite upset about how my mere mention about this book, one

month after I'd already written about this, has been met with fear and

assumptions. "

MESSAGE: Although you have had to fight to be recognized for your

illnesses, in reality you are just over the top fearful people who don't know

what

Hell you are talking about.

" It is a fool's errand for any layperson to tell someone that their doctor

is wrong. "

MESSAGE: Even though you have helped to cause a Federal audit that has

changed this issue, I still think you are a fool and I put no stock in what

you have to say.

I don't card about their......thoughts on the science and etc.

MESSAGE: You are people are ignorant.

Sometimes it's helpful to step back and ask oneself how important one

really is in the scope of anything. Paranoia is a problem of proportion. If we

think we are more important than we are, we start to think people are

paying more attention to us than is actually true.

MESSAGE: Not only are you people ignorant for thinking you know anything

about science, you are ignorant to think any one cares what you have to say.

It's hard to understand unless you're a writer who does publish articles

and books, but the good ones certainly don't need help WITH WRITING.

MESSAGE: Only I know what is right. I am superior to you.

I don't look for nuggets of wisdom in other people's posts because I know

that I have no trouble coming up with them. Okay?

MESSAGE: Your words are are ignorant and frivolous. I am much smarter

than you. And I am going to write a book that portrays that concept.

You can ask anyone. I am really direct. I don't do that to be mean. I

do it to communicate in a very complex, multifaceted issue. I have to tell

you, at this point in time, I don't think I like you because you come

across as a know it all, who is dismissive of the important words that I have

learned MUCH from, from the members of Sickbuildings. Dismissiveness of the

words of those who are the experienced, not the learned, is one of the key

areas I fight in this issue.

So, hope that helps you to understand what you did that caused such a

severe adverse reaction among many. The gist seems to be that they are afraid

you are going to write a book in which between the lines it will be

dismissive and denegrating of those who know this issue inside and out.

Sharon