Re: Our moderators and Dr. Browns protocol.

[Guest guest]

Hi Kim,

I don't think we have corresponded before. I have read and enjoyed some

of your postings. I don't want my first correspondence with you to be

negative, so please take this in the spirit that it was intentioned.

I have been sick for a very long time and so far the only hope I have

been given has been through Dr. Browns therapy and some other treatments

by a savvy environmental doctor. Along the way there have been many

letters fired off to both Adlard and Ethel Snooks. These letters

are usually sent in the middle of the night , often with me in tears

because of the latest problem I have developed and the latest " step

back " in the " two forward one back. "

Always my letters have been answered with patience and kindness. I have

to stress patience because often because of brain fog and fatigue I ask

the same question repeatedly or something that could have been answered

by simply reading the faq sheet.

That aside, no these women are not doctors. But hasn't it been often a

lack of care from doctors and standard rheumatic therapy that has

brought us all together in the first place? As for experience, read

Ethels story on the rheumatic site and tell me how she doesn't know what

she is talking about. That history by the way is only a partial

account. What she has learned since then and practices goes far beyond

anti- biotic therapy. She is always willing to share this research to

our benefit.

Adlards story of how her daughter fought many diseases at once

THROUGH THE PROTOCOL is also available.

So my point is, isn't this site dedicated to and started by people who

would like to forward an alternate therapy to Dmards and such drugs?

Wasn't it started and supported BY THESE TWO WOMEN? Do we not at some

point have to concede decisions ( especially tough ones) to these same

people?

They don't have to dedicate all of their free time to us. They do not

have to research and share. But they do.

As for Pierre, I trust that when I see a letter with both moderators

names at the bottom they had a reason to do what they did. And, as they

stated, any one has the right to correspond with him privately.

I am sure if you knew the history you would know that we are in the

hands of anything but " supposed " moderators.

I am not a confrontational person so I don't want to talk about this

anymore, but these ladies have been too good to me to stand by and say

nothing.

It is an amazing day in Ottawa, Canada. It is going up to 28 degrees

Celsius. Before 8 am this morning I took a bunch of Christmas lights

down from the front of my house. I am washing sheets and doing all the

spring things that would have been unheard of a very short time ago.

Life is good.

Sincerely,

Lee-Anne Assaad

[Guest guest]

I support this view too Kim.. I am extrememely grateful for the existence of

this list It's been going for a long time and some of those times have been

turbulent with people arguing and worse. and Ethel hardly ever

intervene. When they do I trust it's for a good reason. The list does have

to be maintained for the purpose for which it was started.

Gail

> From: fady assaad <fadya@...>

> Reply-fadya@...

> Date: Wed, 17 Apr 2002 10:29:02 -0400

> kimgal@..., group <rheumatic >

> Subject: rheumatic Re: Our moderators and Dr. Browns protocol.

>

> Hi Kim,

> I don't think we have corresponded before. I have read and enjoyed some

> of your postings. I don't want my first correspondence with you to be

> negative, so please take this in the spirit that it was intentioned.

> I have been sick for a very long time and so far the only hope I have

> been given has been through Dr. Browns therapy and some other treatments

> by a savvy environmental doctor. Along the way there have been many

> letters fired off to both Adlard and Ethel Snooks. These letters

> are usually sent in the middle of the night , often with me in tears

> because of the latest problem I have developed and the latest " step

> back " in the " two forward one back. "

> Always my letters have been answered with patience and kindness. I have

> to stress patience because often because of brain fog and fatigue I ask

> the same question repeatedly or something that could have been answered

> by simply reading the faq sheet.

> That aside, no these women are not doctors. But hasn't it been often a

> lack of care from doctors and standard rheumatic therapy that has

> brought us all together in the first place? As for experience, read

> Ethels story on the rheumatic site and tell me how she doesn't know what

> she is talking about. That history by the way is only a partial

> account. What she has learned since then and practices goes far beyond

> anti- biotic therapy. She is always willing to share this research to

> our benefit.

> Adlards story of how her daughter fought many diseases at once

> THROUGH THE PROTOCOL is also available.

> So my point is, isn't this site dedicated to and started by people who

> would like to forward an alternate therapy to Dmards and such drugs?

> Wasn't it started and supported BY THESE TWO WOMEN? Do we not at some

> point have to concede decisions ( especially tough ones) to these same

> people?

> They don't have to dedicate all of their free time to us. They do not

> have to research and share. But they do.

> As for Pierre, I trust that when I see a letter with both moderators

> names at the bottom they had a reason to do what they did. And, as they

> stated, any one has the right to correspond with him privately.

> I am sure if you knew the history you would know that we are in the

> hands of anything but " supposed " moderators.

> I am not a confrontational person so I don't want to talk about this

> anymore, but these ladies have been too good to me to stand by and say

> nothing.

> It is an amazing day in Ottawa, Canada. It is going up to 28 degrees

> Celsius. Before 8 am this morning I took a bunch of Christmas lights

> down from the front of my house. I am washing sheets and doing all the

> spring things that would have been unheard of a very short time ago.

> Life is good.

> Sincerely,

> Lee-Anne Assaad

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Kim, Lee-Anne, Everyone,

Lee-Anne said it so well. You only have to have had experience with

Ethel or for a while to know how they have so unselfishly and

wisely given of themselves daily for such a long, long time.

Sometimes when we read something, without having a " history " of what

is being said, or what has gone before, we cannot possibly know what

lies underneath.

I've come to know Ethel personally through her on-going help for me

in so many crises over the last (almost) six years. She is one of

the kindest, most devoted friends I could possibly have hoped for. I

found her through her story. Also I know, has always been here

for all of us. I've helped lead a local support group, and can tell

you it gets wearying, though I wouldn't give it up for anything.

It is always sad and troubling for me when this kind of strife

happens; but, I'm putting my trust in Kim and Ethel, like Lee-Anne,

and KNOW they had strong reasons for their decisions or they would

never have made this decision. They wish no one ill. I'd stake much

on that!

Let's let go of this for now and get on about our business of helping

each other. We all wish the very best for Pierre.

bg

Lee-Anne

> Hi Kim,

> I don't think we have corresponded before. I have read and enjoyed

some

> of your postings. I don't want my first correspondence with you to

be

> negative, so please take this in the spirit that it was intentioned.

> I have been sick for a very long time and so far the only hope I

have

> been given has been through Dr. Browns therapy and some other

treatments

> by a savvy environmental doctor. Along the way there have been many

> letters fired off to both Adlard and Ethel Snooks. These

letters

> are usually sent in the middle of the night , often with me in tears

> because of the latest problem I have developed and the latest " step

> back " in the " two forward one back. "

> Always my letters have been answered with patience and kindness. I

have

> to stress patience because often because of brain fog and fatigue I

ask

> the same question repeatedly or something that could have been

answered

> by simply reading the faq sheet.

> That aside, no these women are not doctors. But hasn't it been

often a

> lack of care from doctors and standard rheumatic therapy that has

> brought us all together in the first place? As for experience, read

> Ethels story on the rheumatic site and tell me how she doesn't know

what

> she is talking about. That history by the way is only a partial

> account. What she has learned since then and practices goes far

beyond

> anti- biotic therapy. She is always willing to share this research

to

> our benefit.

> Adlards story of how her daughter fought many diseases at once

> THROUGH THE PROTOCOL is also available.

> So my point is, isn't this site dedicated to and started by people

who

> would like to forward an alternate therapy to Dmards and such

drugs?

> Wasn't it started and supported BY THESE TWO WOMEN? Do we not at

some

> point have to concede decisions ( especially tough ones) to these

same

> people?

> They don't have to dedicate all of their free time to us. They do

not

> have to research and share. But they do.

> As for Pierre, I trust that when I see a letter with both moderators

> names at the bottom they had a reason to do what they did. And, as

they

> stated, any one has the right to correspond with him privately.

> I am sure if you knew the history you would know that we are in the

> hands of anything but " supposed " moderators.

> I am not a confrontational person so I don't want to talk about this

> anymore, but these ladies have been too good to me to stand by and

say

> nothing.

> It is an amazing day in Ottawa, Canada. It is going up to 28

degrees

> Celsius. Before 8 am this morning I took a bunch of Christmas

lights

> down from the front of my house. I am washing sheets and doing all

the

> spring things that would have been unheard of a very short time ago.

> Life is good.

> Sincerely,

> Lee-Anne Assaad

[Guest guest]

rheumatic Re: Our moderators and Dr. Browns protocol.

>

>

> > Hi Kim,

> > I don't think we have corresponded before. I have read and enjoyed some

> > of your postings. I don't want my first correspondence with you to be

> > negative, so please take this in the spirit that it was intentioned.

> > I have been sick for a very long time and so far the only hope I have

> > been given has been through Dr. Browns therapy and some other treatments

> > by a savvy environmental doctor. Along the way there have been many

> > letters fired off to both Adlard and Ethel Snooks. These letters

> > are usually sent in the middle of the night , often with me in tears

> > because of the latest problem I have developed and the latest " step

> > back " in the " two forward one back. "

> > Always my letters have been answered with patience and kindness. I have

> > to stress patience because often because of brain fog and fatigue I ask

> > the same question repeatedly or something that could have been answered

> > by simply reading the faq sheet.

> > That aside, no these women are not doctors. But hasn't it been often a

> > lack of care from doctors and standard rheumatic therapy that has

> > brought us all together in the first place? As for experience, read

> > Ethels story on the rheumatic site and tell me how she doesn't know what

> > she is talking about. That history by the way is only a partial

> > account. What she has learned since then and practices goes far beyond

> > anti- biotic therapy. She is always willing to share this research to

> > our benefit.

> > Adlards story of how her daughter fought many diseases at once

> > THROUGH THE PROTOCOL is also available.

> > So my point is, isn't this site dedicated to and started by people who

> > would like to forward an alternate therapy to Dmards and such drugs?

> > Wasn't it started and supported BY THESE TWO WOMEN? Do we not at some

> > point have to concede decisions ( especially tough ones) to these same

> > people?

> > They don't have to dedicate all of their free time to us. They do not

> > have to research and share. But they do.

> > As for Pierre, I trust that when I see a letter with both moderators

> > names at the bottom they had a reason to do what they did. And, as they

> > stated, any one has the right to correspond with him privately.

> > I am sure if you knew the history you would know that we are in the

> > hands of anything but " supposed " moderators.

> > I am not a confrontational person so I don't want to talk about this

> > anymore, but these ladies have been too good to me to stand by and say

> > nothing.

> > It is an amazing day in Ottawa, Canada. It is going up to 28 degrees

> > Celsius. Before 8 am this morning I took a bunch of Christmas lights

> > down from the front of my house. I am washing sheets and doing all the

> > spring things that would have been unheard of a very short time ago.

> > Life is good.

> > Sincerely,

> > Lee-Anne Assaad

> >

> >

> >

> >

> > To unsubscribe, email: rheumatic-unsubscribeegroups

> >

> >

> >

[Guest guest]

Hi.

A perspective from a newbie...and boy I sure don’t want to get myself

black listed here..

It seems to me that the situation with Pierre and the moderators is

rather interesting.. for a number of reasons..

Within the medical community itself there is dissenting opinions

regarding protocols and methodologies...

The moderators are basing their determinations upon the fact that

Pierre's protocol does not follow what is laid out in the original

protocol....

Every one has their own opinions...it is opinions that inform us all to

either accept what is said at face value or to search for ourselves so

that we can make our own determinations...

I guess I am of the opinion that there should be a determination of

maliciousness on behalf of Pierre...is he a malicious person in his

responses...is he purposefully being the way he was described...

Opinions and sharing are what makes the group the group....there will

always be dissenters and people who they believe their information is

tantamount and without circumspection....that is their belief..

I would certainly be afraid to share my personal situation and knowledge

base in case I made an error as judged by the moderators..

I find this rather " old style " methodology of information being

exchanged...

But was Pierre being malicious or was he in his way being helpful..

Remember please...each doctor has their own approach and their own

protocol....we as the patient have to determine what is of merit and

what is not....

Only God makes NO MISTAKES....

I am not wishing to lose my status as a recipient of information....

But I also believe in the premise of exchange of knowledge and personal

situation....after all...if I chose a certain route that did not agree

with the protocol would I also be moderated to the state of a non

member...

Sincerely

sam

rheumatic Re: Our moderators and Dr. Browns protocol.

>

> Hi Kim,

> I don't think we have corresponded before. I have read and enjoyed

some

> of your postings. I don't want my first correspondence with you to be

> negative, so please take this in the spirit that it was intentioned.

> I have been sick for a very long time and so far the only hope I have

> been given has been through Dr. Browns therapy and some other

treatments

> by a savvy environmental doctor. Along the way there have been many

> letters fired off to both Adlard and Ethel Snooks. These

letters

> are usually sent in the middle of the night , often with me in tears

> because of the latest problem I have developed and the latest " step

> back " in the " two forward one back. "

> Always my letters have been answered with patience and kindness. I

have

> to stress patience because often because of brain fog and fatigue I

ask

> the same question repeatedly or something that could have been

answered

> by simply reading the faq sheet.

> That aside, no these women are not doctors. But hasn't it been often

a

> lack of care from doctors and standard rheumatic therapy that has

> brought us all together in the first place? As for experience, read

> Ethels story on the rheumatic site and tell me how she doesn't know

what

> she is talking about. That history by the way is only a partial

> account. What she has learned since then and practices goes far

beyond

> anti- biotic therapy. She is always willing to share this research to

> our benefit.

> Adlards story of how her daughter fought many diseases at once

> THROUGH THE PROTOCOL is also available.

> So my point is, isn't this site dedicated to and started by people who

> would like to forward an alternate therapy to Dmards and such drugs?

> Wasn't it started and supported BY THESE TWO WOMEN? Do we not at some

> point have to concede decisions ( especially tough ones) to these same

> people?

> They don't have to dedicate all of their free time to us. They do not

> have to research and share. But they do.

> As for Pierre, I trust that when I see a letter with both moderators

> names at the bottom they had a reason to do what they did. And, as

they

> stated, any one has the right to correspond with him privately.

> I am sure if you knew the history you would know that we are in the

> hands of anything but " supposed " moderators.

> I am not a confrontational person so I don't want to talk about this

> anymore, but these ladies have been too good to me to stand by and

say

> nothing.

> It is an amazing day in Ottawa, Canada. It is going up to 28 degrees

> Celsius. Before 8 am this morning I took a bunch of Christmas lights

> down from the front of my house. I am washing sheets and doing all

the

> spring things that would have been unheard of a very short time ago.

> Life is good.

> Sincerely,

> Lee-Anne Assaad

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

>Hi.

>

>A perspective from a newbie...and boy I sure don’t want to get myself

>black listed here..

>

>It seems to me that the situation with Pierre and the moderators is

>rather interesting.. for a number of reasons..

>

>Within the medical community itself there is dissenting opinions

>regarding protocols and methodologies...

>

>The moderators are basing their determinations upon the fact that

>Pierre's protocol does not follow what is laid out in the original

>protocol....

>

>Every one has their own opinions...it is opinions that inform us all to

>either accept what is said at face value or to search for ourselves so

>that we can make our own determinations...

>

>I guess I am of the opinion that there should be a determination of

>maliciousness on behalf of Pierre...is he a malicious person in his

>responses...is he purposefully being the way he was described...

>

>Opinions and sharing are what makes the group the group....there will

>always be dissenters and people who they believe their information is

>tantamount and without circumspection....that is their belief..

>

>I would certainly be afraid to share my personal situation and knowledge

>base in case I made an error as judged by the moderators..

>

>I find this rather " old style " methodology of information being

>exchanged...

>

>But was Pierre being malicious or was he in his way being helpful..

>

>Remember please...each doctor has their own approach and their own

>protocol....we as the patient have to determine what is of merit and

>what is not....

>

>Only God makes NO MISTAKES....

>

>I am not wishing to lose my status as a recipient of information....

>

>But I also believe in the premise of exchange of knowledge and personal

>situation....after all...if I chose a certain route that did not agree

>with the protocol would I also be moderated to the state of a non

>member...

>

>Sincerely

>sam

A couple of points. As I said before, this is an unmoderated

group. Therefore, and Ethyl are NOT moderators, they

are list owners. Unfortunately, list owners have the same

ability as list moderators to ban people. So that's

's fault for permitting an owner to be able to ban

someone in an unmoderated group. It kind of defeats the

purpose of calling and listing the group as unmoderated.

Nevertheless, that's how it is, so in reality this is a

moderated group rather than an unmoderated group. The only

difference is that the messages don't have to be approved

before they are posted. Needless to say, there is no use

arguing about HOW to moderate a group and which messages should

or shouldn't be sent or which people should or shouldn't be

banned, because that is totally dependent on the disposition

of the owners/moderators. It's just something we have to

accept or leave the group. I'll be sticking around, but

I again would urge the list owners to reinstate Pierre.

Vern

************************

Please disregard the link to my ISP!

http://www.bealenet.com

[Guest guest]

>

> But I also believe in the premise of exchange of knowledge and

personal

> situation....after all...if I chose a certain route that did not

agree

> with the protocol would I also be moderated to the state of a non

> member...

>

> Sincerely

> sam

Sam,

At least from my experience, you will not get the " boot " if you

follow a different protocol. I have drifted back and forth in my use

of antibiotics but have mainly remained on (gasp!)Methotrexate.

Despite many here probably thinking that I'm dead wrong in that

approach, I have seen very little in the way of personal attacks on

myself for having favored that approach. The moderators/non

moderators have not suggested that I need to go elsewhere, which I

find actually to be a quite tolerant attitude.

I think more than anything it is the tone and substance of what you

are posting that will affect your standing on the list. I suspect

that or Ethel will point out to you privately if you are

heading off in the wrong direction. Since it is their list, I

respect their decisions, even if at times I might disagree.

I feel like others that Pierre has from time to time crossed the line

(i have been off and on the list since back in 1998 , so I have seen

quite a few posts) and was no doubt warned about it in private.

Obviously he crossed the line one too many times. I appreciated the

research articles he donated as long as they were just quotes from

another source. When individuals start touting their own protocols,

it's probably best they go set up their own list.

All that aside, this nasty little disease certainly can lead to

confrontational discussion on protocols, treatments, etc. I am

impressed that this group has not deteriorated into a nasty, petty

group like what I see on so many other groups. Obviously most

members care deeply about each other. And that's the reason I keep

returning to this list, because on the whole, I like the people here.

Mark

[Guest guest]

My vote is with Sam and Kim-I do not want to be blacklisted, either, and do

not believe that Pierre was being malicious-just has a different opinion

than Dr. Brown's in some cases and when I downloaded all the info Pierre

gave me I had no trouble discerning that a lot was PIERRE'S opinion, and the

protocol he asked his doc to put him on....

I'm just afraid that because his opinion and AP differ from Dr. Brown's as

does mine-(I hope and pray that the daily AP I'm taking, as per Dr. Mirkin

will do the trick for me!) that he is being banned because of that and THAT

SCARES ME-We need and can use different opinions and outlooks. I almost

feel like I'm back in my dr's office, cowering in fear, because I said

something that s/he did not agree with...

So, moderators, I know you have a tough job, but please let the group know

what's up-Are dissenting opinions still allowed?

Thanks much for all you do!

Sally N Va

rheumatic Re: Our moderators and Dr. Browns protocol.

>

> Hi Kim,

> I don't think we have corresponded before. I have read and enjoyed

some

> of your postings. I don't want my first correspondence with you to be

> negative, so please take this in the spirit that it was intentioned.

> I have been sick for a very long time and so far the only hope I have

> been given has been through Dr. Browns therapy and some other

treatments

> by a savvy environmental doctor. Along the way there have been many

> letters fired off to both Adlard and Ethel Snooks. These

letters

> are usually sent in the middle of the night , often with me in tears

> because of the latest problem I have developed and the latest " step

> back " in the " two forward one back. "

> Always my letters have been answered with patience and kindness. I

have

> to stress patience because often because of brain fog and fatigue I

ask

> the same question repeatedly or something that could have been

answered

> by simply reading the faq sheet.

> That aside, no these women are not doctors. But hasn't it been often

a

> lack of care from doctors and standard rheumatic therapy that has

> brought us all together in the first place? As for experience, read

> Ethels story on the rheumatic site and tell me how she doesn't know

what

> she is talking about. That history by the way is only a partial

> account. What she has learned since then and practices goes far

beyond

> anti- biotic therapy. She is always willing to share this research to

> our benefit.

> Adlards story of how her daughter fought many diseases at once

> THROUGH THE PROTOCOL is also available.

> So my point is, isn't this site dedicated to and started by people who

> would like to forward an alternate therapy to Dmards and such drugs?

> Wasn't it started and supported BY THESE TWO WOMEN? Do we not at some

> point have to concede decisions ( especially tough ones) to these same

> people?

> They don't have to dedicate all of their free time to us. They do not

> have to research and share. But they do.

> As for Pierre, I trust that when I see a letter with both moderators

> names at the bottom they had a reason to do what they did. And, as

they

> stated, any one has the right to correspond with him privately.

> I am sure if you knew the history you would know that we are in the

> hands of anything but " supposed " moderators.

> I am not a confrontational person so I don't want to talk about this

> anymore, but these ladies have been too good to me to stand by and

say

> nothing.

> It is an amazing day in Ottawa, Canada. It is going up to 28 degrees

> Celsius. Before 8 am this morning I took a bunch of Christmas lights

> down from the front of my house. I am washing sheets and doing all

the

> spring things that would have been unheard of a very short time ago.

> Life is good.

> Sincerely,

> Lee-Anne Assaad

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Hi Sally,

>I do not want to be blacklisted, either

We've banned only two people in the six years that rheumatic.org and its

associated

groups have been running, both after repeated warnings and not for trivial

reasons

either.

>Are dissenting opinions still allowed?

Anyone is welcome to share with the group what they think, e.g.

" I am currently taking... "

" I find that <drug-name> is still helping me... "

" You might want to try... "

" Someone I know found that... "

" My experience was... "

" I think... "

That is entirely different from saying,

" Everyone with rheumatic disease needs to take... "

" You should not be doing that...you should be... "

especially when presented in a quasi-professional manner which induces many

people think must be followed.

This group is backed by several doctors who are very experienced with

McPherson Brown's protocol. As doctors don't generally have time to run web

pages and mailing lists, the information from Ethel, myself and many of our

experienced members comes directly from these doctors, including the varying

doses of the antibiotic and herbal support. All the basic information is

displayed

on rheumatic.org in the section " Information for you and your doctor " .

Chris.