Re: OT: call for essays on living with Mold Illness!

January 15, 2006

This is a great idea!

Tell us more!

On 1/14/06, lunagirl32002 <j_genser@...> wrote:

> Hi all

> I am in the midst of developing a website called Planet Thrive--a grassroots

> community for personal wellness. It's for people like us struggling to recover

> from the damaging effects of an increasingly toxic world. I am hoping for it

to

> go live in March 2006.

>

> I'm looking for essays for our section entitled In My Shoes: An Experiential

> Look at Illness. Basically, I want to present a collection of essays that let

the

> readers know what it is like to live with a particular health condition. An " A

day

> in the life " , or snapshot approach. Please consider writing a 1 page (or

> longer) essay on what a typical day is like living with Mold Illness, so

others

> can better understand our experience.

>

> Essays can take different forms...some ideas:

> 1. Daily schedule list (ie 9am-11am Tried to get up but was too tired and had

> to stay in bed. 11am-1pm Took me 2 hours to prepare breakfast because.....)

> 2. Journal/diary entries

> 3. Event-by-event account. (ie I got up this morning and even before I woke I

> knew it was going to be a hard day....)

>

> We are offering complimentary fully upgraded memberships to all for the first

> three months. Please submit essays to me backchannel by the end of

> February 2006.

>

> Thank you!

> Genser

> founder, PlanetThrive.com

>

> FAIR USE NOTICE:

>

January 15, 2006

>>>We are offering complimentary fully upgraded memberships to all for the

first three months. Please submit essays to me backchannel by the end of

February 2006.Thank you! Genser founder, PlanetThrive.com>>>>

Good Morning :

Would you be so kind to explain the membership levels. I don't quite

understand " complimentary fully upgraded membership....first three months " .

Will you have different levels of memberships and fees? If so would you

please explain the different levels and costs.

Thanks so much,

Rosie

January 15, 2006

Hello Rosie, and the others who responded to my post. This site is still in

development but I hope to have it up online in a month or two. My intent is

to have most of the areas be accessible with a FREE membership. However,

certain areas will offer features that can only be accessed if you upgrade

to a paid membership. I envision only 2 levels of membership at this

time--free, and paid.

My site will be a comprehensive online health community, with many features

that will help people struggling with unknown symptoms to find information,

support, inspiration, and more. The main goals of creating this site were to

help people who are in the dark and not getting much help from mainstream

medicine to find answers and make their path to wellness a quicker, more

direct route. And also, along the way, to provide them with support and

avenues of expression in a way that is not really offered anywhere online

right now. Members will be able to upload various media as well--video,

audio, text files. Members will have their own Personal Healing Blog. I am

very excited about this community and don't want to say much more before the

site is completed. I had hoped to have it online by now, but due to health

complications, things are just taking much longer than planned...

I will be offering free fully upgraded memberships to all those on the

groups for the first 3 months, so you can experience all features of

the site, and at the same time, help build up the foundation of the

databases. There will also be ways to earn credits so you can apply them to

a monthly membership if you want to upgrade.

The site is a general health site, but will undoubtedly have a large amount

of resources for those with Biotoxin Illness and other Invisible Illnesses,

since those are the areas that have affected me personally and that I have

done most of my research in.

Looking forward to sharing it with you all. In the meantime, send in your

essays so we can let the world know what Mold Illness looks and feels like

on a day to day basis!

Much thanks for your positive response and support

<<From: " healthier4all " <Healthier4All@...>

<<Good Morning :

Would you be so kind to explain the membership levels. I don't quite

understand " complimentary fully upgraded membership....first three months " .

Will you have different levels of memberships and fees? If so would you

please explain the different levels and costs.

Thanks so much,

Rosie

January 16, 2006

I also wanted to add that I plan to have a study group for those pursuing

Shoemaker's Biotoxin Protocol line of testing and treatment on my site Planet

Thrive. The group will discuss the various tests involved, treatment progress,

theory, and whatever else comes up.

I hope there are those on this list--especially current patients of Dr S--who

would be interested in joining this study group. I will let you know when the

site is up.

--- In , LiveSimply <quackadillian@g...>

wrote:

>

> This is a great idea!

>

> Tell us more!

January 16, 2006

Hi -

I saw your posts of the last few days. I guess I'm still a bit confused about

what you're trying to do. Sounds mysterious, like the premier of a movie where

you don't know the title, director, plot, or cast. It could be something great

or something terrible. I can't tell, because the trailers only tell me to get

excited about... " it " .

You asked members here to contribute content to your planned website for free

in return for a limited free membership to...what, exactly? From what you've

written, I can't really tell what your intended premium content is, or whether I

would want to be a part of what you intend to do. When I have been published

elsewhere in the past, I've learned the hard way that it's wise to always find

out who and what my good name is about to be is associated with. If commercial

use is involved, I get paid. If it's a pro bono piece for a free publication,

then I give freely - but I choose carefully where and why I spend my efforts.

You mentioned support for people sick from mold, but we already have that here

for free. And you mentioned a group of people who would study Shoemaker's work

and protocol, but a bunch of us here also do that here for free on an ad hoc

basis. I would be wondering if Shoemaker had consented to guide or correspond

with your new group, or whether your intent was to try to popularize his work or

just study his ideas, or what. I know he's run into some trouble in the past

with similar situations where _his_ name got associated with practices he didn't

necessarily want to be party to.

You see what I mean. I can't tell from what you've said so far, exactly what

it is you're doing. So if you wouldn't mind, and I mean this in a friendly way,

I'd like to know more.

lunagirl32002 <j_genser@...> wrote:

I also wanted to add that I plan to have a study group for those pursuing

Shoemaker's Biotoxin Protocol line of testing and treatment on my site Planet

Thrive. The group will discuss the various tests involved, treatment progress,

theory, and whatever else comes up.

I hope there are those on this list--especially current patients of Dr S--who

would be interested in joining this study group. I will let you know when the

site is up.

--- In , LiveSimply <quackadillian@g...>

wrote:

>

> This is a great idea!

>

> Tell us more!

FAIR USE NOTICE:

January 17, 2006

Hi Serena,

I'm truly sorry my posts came off so mysterious. That was not my intent and

I thank you for bringing it to my attention. Your points are well taken and

I agree with your philosophy, which is exactly why I have been hesitant to

say too much about my site yet. My site is not yet built and I don't want to

make any promises I cannot keep. I was merely attempting to get essays from

people about first-hand accounts of living with Mold Illness, which will be

accessible to all for FREE. This will be a health community site with both a

free membership level and upgraded membership that includes special

features. However, the foundation of the site is free to all.

Other members have also asked me to say more but I feel uncomfortable

marketing my site before it is built and things are set in stone. So let's

just leave it at that for now. I will announce my site and it's content when

it goes live and you can decide for yourself whether you want any

involvement in it.

Regarding the discussion group for Biotoxin Illness. Yes, it is a free

group. No, this is not connected to Dr Shoemaker. In fact, I would hope that

other approaches to treating Biotoxin Illness are discussed. I am not a

patient of Dr Shoemaker, although I have applied to be one twice and was not

accepted. I have a lot of unanswered questions that I would like to dialogue

with people about, and when I have asked questions on this list in the past

I got very few responses. My thought was that a group devoted to that topic

might be helpful to those struggling to follow his protocol locally without

the benefit of his guidance. I have had other people suggest it to me

backchannel. I would love to hear more about the problems of past groups

like this, if you feel like emailing me backchannel.

Any other questions about my site or the essays I am looking for, please

email me backchannel so we don't take up group space.

Thanks,

<<From: SERENA EDWARDS <pushcrash@...>

Hi -

I saw your posts of the last few days. I guess I'm still a bit confused

about

what you're trying to do. Sounds mysterious, like the premier of a movie

where

you don't know the title, director, plot, or cast. It could be something

great

or something terrible. I can't tell, because the trailers only tell me to

get

excited about... " it " .

You asked members here to contribute content to your planned website for

free

in return for a limited free membership to...what, exactly? From what you've

written, I can't really tell what your intended premium content is, or

whether I

would want to be a part of what you intend to do. When I have been

published

elsewhere in the past, I've learned the hard way that it's wise to always

find

out who and what my good name is about to be is associated with. If

commercial

use is involved, I get paid. If it's a pro bono piece for a free

publication,

then I give freely - but I choose carefully where and why I spend my

efforts.

You mentioned support for people sick from mold, but we already have that

here

for free. And you mentioned a group of people who would study Shoemaker's

work

and protocol, but a bunch of us here also do that here for free on an ad hoc

basis. I would be wondering if Shoemaker had consented to guide or

correspond

with your new group, or whether your intent was to try to popularize his

work or

just study his ideas, or what. I know he's run into some trouble in the past

with similar situations where _his_ name got associated with practices he

didn't

necessarily want to be party to.

You see what I mean. I can't tell from what you've said so far, exactly

what

it is you're doing. So if you wouldn't mind, and I mean this in a friendly

way,

I'd like to know more.

January 17, 2006

If people want to write content on fighting mold illness, they can

write it and post it/upload it under a open Creative Commons license..

( see http://creativecommons.org ) as PDF, text, etc.

That is the best way to protect content while also making it freely available..

January 17, 2006

,

You don't need to be embarassed, you are just trying to support

yourself by finding a valid business model for your site. Its quite

possible that your content is worth paying for, and also quite

possible that over time, you will be able to pay others to help

develop it..

But people who contribute content for free should retain the rights to

it and that content should be free to access.. (unless they agree

otherwise)

Wikipedia.org has had a lot of problems with people trying to steal

wikipedia content and sell it - violating the open source licenses it

is developed under..

But as long as you are upfront with people that access to it may not

remain free, I don't see a problem with that. Make sure the rights to

the material are clearly defined..

January 17, 2006

My concern wasn't entirely about retaining rights. It was about the general

content and nature of the paid product. I back-channeled as requested for

further discussion.

My interest and questions would have been as valid with anyone. Consider - we

have all been deeply concerned about what was happening in the wake of Katrina.

A " volunteer " group (I'm no longer certain of their exact status) went there and

did some testing, which was great, and so of course some of us wanted to support

their actions. Then, they turned around and started hyping this commercial

product they wanted to use in remediation down there (which has not been proven

to be at all useful for that particular purpose, btw). Did it work? Dunno.

After looking over the product in question, I have very, very serious doubts.

And I'm deeply annoyed that the thing was presented as a humanitarian effort,

only to find it firmly attached to a commercial operation. Would I want my name,

or even my anonymous support, attached to that? UH-UH, no way, not even a little

bit.

I say that with no particular prejudice toward what is doing. Hopefully,

it will be great. But I do ask questions, and the above instance is an example

of a case where I wish we'd asked more, sooner.

LiveSimply <quackadillian@...> wrote:

,

You don't need to be embarassed, you are just trying to support

yourself by finding a valid business model for your site. Its quite

possible that your content is worth paying for, and also quite

possible that over time, you will be able to pay others to help

develop it..

But people who contribute content for free should retain the rights to

it and that content should be free to access.. (unless they agree

otherwise)

Wikipedia.org has had a lot of problems with people trying to steal

wikipedia content and sell it - violating the open source licenses it

is developed under..

But as long as you are upfront with people that access to it may not

remain free, I don't see a problem with that. Make sure the rights to

the material are clearly defined..

Serena

There is no such thing as an anomaly. Recheck your original premise.

...Ayn Rand,

paraphrased

---------------------------------

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Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 17, 2006

>>>> I say that with no particular prejudice toward what is doing.

Hopefully, it will be great. But I do ask questions, and the above instance

is an example of a case where I wish we'd asked more, sooner.>>>>

Well stated Serena and that's my motto: ask questions first and assume

nothing; that applies to everything in my life and encourage others to do

the same. We have a right to ask questions and expect to get answers; if not

then we move on. I want to know how OTC medicines work, the ingredients,

any contraindications, nutrients depleted in my body from their use,

interactions. I want to know what's in the paint or sealers I need in my

home, new furnishings, toiletries, household cleaning products, so called

" natural beef and chicken " etc.

Another concern is there are so many websites and discussion groups in

cyberspace; how many can we join and monitor in a day. It can become

overwhelming; at least for me.

Concerning the paid subscription area of the her website, I don't blame her

for wanting to charge knowing web hosting is expensive; however would like

to know how much it will be and what will be included in the paid area. So

many with chronic illness don't have extra money.

Lol often thought would be nice if we could find a way to compensate our KC

for his extraordinary time he devotes to this group just to pay for his

internet connection, the books, periodicals, etc he needs to continue his

research to be able to share with us his vast knowledge.

Rosie

January 17, 2006

I *totally* second your HEARTFELT THANKS to KC, Serena, yourself,

Grimes, Drs S and S, and everyone else here who is sincerely involved

in fighting for our RIGHT TO LIVE SAFELY in our homes and workplaces..

Thank you.

all of you, again, thank you...

__________

:0

January 17, 2006

LiveSimply, Rosie and many others,

I truly appreciate the kind thoughts. You've got me all chocked up

here, because I don't consider myself any different than anyone else

on this board and I have been slapped down for thinking just that. I

am far from being perfect, I just try and do what is best and in a

proper manner to educate the public to the best of my ability. I may

not always make the right choices at times and before I do make a

decision, I always ask for feedback from other members. I am very

pleased to be a part of what makes this board what it is today,

naturally you are the other part.

I guess you can say I was in the right place at the right time, if

there is such as place in this mold issue, talk about a double edge

sword. When I had the opportunity from the listowner Barbara H. to

take over this board, so that she could spend more time with her

family and also trying to recover from her exposure, I did not

hesitate. So we also must bestow thanks to Barbara for starting this

board many, many years ago when there was nothing out there for

support or information dealing with our illness. At that time not

realizing that this would turn into an obsession, 24/7. I took this

privilege on, not fully understanding at that time the full issue and

were my dedication would lead me. At that moment my selfish thought

was for myself and of course my wife to help us get through each day.

This is what I needed to stay focused, cause at that time your

thoughts can go off in many dangerous directions. It had not been long

to determine how many of you were in the same boat, financially,

emotionally, physically and mentally. Damn, talk about an overload.

Has it gotten any easier today, somewhat, because it is more

acknowledged today than it was a few years ago. Then you see extreme

home makeover and reality sets in again. The devastation that this has

had on many of our lives that most of the general public will never

understand is beyond comprehension.

To all new members, if you have a mold issue in your home or

workplace, it is imperative that you take action immediately. Don't

wait until you can't get out of bed or permanent disabilities have

taken hold. Don't wait to experience what so many of us have had to

endure, because the help was not out there for us, it's there for you

now. TAKE ADVANTAGE OF IT while you can.

Something else I don't like to discuss, but I will because I have been

asked by so many, professionals and nonprofessionals and members of

this board that are in the same boat as I. I have refused many times

suggestions from so many to accept compensation for the many hours off

this board, talking with victims,doing research, direction, dealing

with politicians,physicians and media, etc., all for the reason of

preventing others from experiencing what we have, you can recover if

caught in time. I have been accused of getting " rich " off the back of

victims. As of this date I have NOT collected one cent from any

victim. My 0 balance proves it. Unfortunately I will never be rich,

because if I did have the opportunity I know where these funds would

go and that is to help people like yourselves. Isn't that what family

and friends are supposed to be all about?!!!

If you would like to express your thanks and appreciation in a

different way, that is up to you all.

Warm regards to all,

KC

--- In , LiveSimply <quackadillian@g...>

wrote:

>

> I *totally* second your HEARTFELT THANKS to KC, Serena, yourself,

> Grimes, Drs S and S, and everyone else here who is sincerely involved

> in fighting for our RIGHT TO LIVE SAFELY in our homes and

workplaces..

>

> Thank you.

>

> all of you, again, thank you...

>

> __________

>

> :0

>

January 24, 2006

,

I read your post and Serena's answer.( way to go Serena)

All I have to say to you is....... " WHAT? " I don't get it!!!!!!

Confused,

Marcie

julie genser <j_genser@...> wrote: