Re: Special Notice: Group Etiquette

[Guest guest]

Oh boy ,

I was under the assumption that the beauty of this sort of chat group was

the fact that we will see all the messages that everyone writes, regardless

of which ones were intended for us in particular. I personally want to see

most of the messages because how can someone else determine which ones I

would want to see. A simple question to someone, that incidentaly might help

me in some small way will never make it to my in-box unless it is directed

to the general addy. Not sure I'd like anyone making the decision as to

which messages I'd rather see but me. Sure, I agree if it is a personal

message that would not possibly mean anything to anyone else but the person

it is directed to, then by all means direct it to just that person. For a

long time I was just hitting the reply button to respond, assuming that

everyone would see my answer. I just recently realized that this is not the

case so I have been cc'ing the group. I am cc'ing this particular message as

well cuz I'd like to know if I am way off on this issue. Of course we all

have the ability to read and delete if a particular message means nothing to

us or does not spark a question that we would not have otherwise thought of

until that time. Anyone have any other thoughts on this issue????? Joyce.

>From: " Gluck " <joelg@...>

>low dose naltrexone

>Subject: [low dose naltrexone] Special Notice: Group Etiquette

>Date: Mon, 07 Apr 2003 16:45:24 -0000

>

>Dear LDN Group members,

>

>Thank you for participating in our dynamic, growing discussion group

>about Low Dose Naltrexone (LDN)!

>

>The purpose of this message is to underscore a few principles that we

>consider important as the group grows in size:

>

>1) Message volume to the group has increased sharply recently. Two

>thoughts on this:

> a. When writing e-mail, please keep the number of messages you

>address to the entire LDN group to a minimum. If you are responding to

>a single person, please do not send your reply to the entire LDN group

>unless there is a very important reason to do so.

> b. If you would prefer not to receive so much e-mail from the LDN

>group, you can visit the members page --

>low dose naltrexone/members (you will need

>to log in first) -- and change your Message Delivery option to either

> " Daily Digest " (to receive no more than one e-mail per day, containing

>all the messages sent to the group that day), or " Special Notices " (to

>receive only special notices from the moderator, such as this message,

>as well as future messages announcing updates to the LDN website).

>

>2) has a very strict policy about spam: Members may not

>use the service to send unsolicited or unauthorized advertising,

>promotional materials, spam, chain letters, multilevel/pyramid

>schemes, or any other form of solicitation. For this reason,

>issacblack@... has been banned from the group.

>

>3) It is not acceptable for members to write to other members claiming

>that they are the group moderator. ( " L. Finestone " is not the group

>moderator.) If anyone writes to you claiming to be the group moderator

>or owner, please forward the message to email@...

>for verification.

>

>4) The LDN group was set up by the LDN website editors to allow

>a free dialogue to occur among those interested in LDN and its use.

>Unless pressed, it is not our intention to screen messages to the LDN

>group or censor them in any way. We ask that group members take

>responsibility for what they post to the group.

>

>Thank you for your kind attention,

>LDN Website Editors

>email@...

>

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[Guest guest]

For the vitality of the board..it is important that we discuss

issues out in the open..and not hide opinions and thoughts in

personal messages. The suggestion to reply only to individuals is a

retrograde step pushed by the filler experts.. a clever attempt to

filter out inconvenient issues.. But what do I know..

The LDN movement is now moving into its second stage.. the first

stage being dominated by activists and the experts on fillers. In

the second stage.. when even the NMSS has started to see things our

way, (atleast temporarily)..LDN is going to come under increased

scrutiny by professionals.. who ask inconvenient questions.

Questions like what is the evidence that LDN works in MS (leave

alone the all encompassing claims in cancer, HIV and a host of other

diseases), why has Dr.B not published his 98 % relapse free rate in

a medical journal ?. How can we ensure that this information will be

published in a medical journal so that the entire world knows about

this miraculous drug. Would Dr.B be willing to meet top neurologists

and present his data ?, what happened to the visit from NIH to

Dr.Bihari some years ago.. where did it get stalled ?. If the truth

behind LDN is to come out..we need to answer these questions and in

the open. Unless we do so.. there will be no real trial of LDN.. and

some individuals with MS will have their disease worsen.. or their

cancer advance.. because they will persist on changing fillers under

the advice of experts.. like the recent post by chiefman..

A