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Re: Facebook Welcomes TPA

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Unfortunately I have been forced to temporarily remove the Facebook page as I

discovered anyone could post onto the page without authorisation an inherant

security flaw !

I'm now in the process of setting TPA up as a full blown user and not a page,

therefore people will have to request to be " friends " and only they will be

allowed to post on the Wall.

Apologies for the confusion and hope to have it up at the weekend and to welcome

those who already " liked " us there.

Cheers

Neil

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Wouldn't it be better as a page instead of a user, no need to mess around with

friend requests then.

There must be a setting somewhere as most of the time I can't post on a wall

unless I have " liked " it.

>

> Unfortunately I have been forced to temporarily remove the Facebook page as I

discovered anyone could post onto the page without authorisation an inherant

security flaw !

>

> I'm now in the process of setting TPA up as a full blown user and not a page,

therefore people will have to request to be " friends " and only they will be

allowed to post on the Wall.

>

> Apologies for the confusion and hope to have it up at the weekend and to

welcome those who already " liked " us there.

>

> Cheers

> Neil

>

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Unfortunately the setting only allows all to post or none, so means any random

" like " could post stuff on the wall.

Like this forum we need to be able to control the " quality " of stuff posting to

keep the good name of the TPA.

Cheers

neil

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So is anybody willing to volunteer their services to help monitor and

moderate what is allowed on our Facebook? I do not have time to do this

as our forum is too busy and other stuff that needs to be done in the

background.

Luv - Sheila

>

> Unfortunately the setting only allows all to post or none, so means

any random " like " could post stuff on the wall.

>

> Like this forum we need to be able to control the " quality " of stuff

posting to keep the good name of the TPA.

>

> Cheers

> neil

>

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Hello, is TPA adding freinds, or having a page or a private group. The page with

'likes' is the one where random people can post. The friends only one means that

TPA would have to add before they could post and the private group is for groups

who only want member of that group to be able to see their posts, not even

friends who are not members would see them. I use Face Book for a lot of special

needs support groups, to get up to date information. I find it extremely useful.

Jan x

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Hi Janine

Which do you think would be more useful ?

I am concerned following the recent posts that were randomly posted to the wall

of the group, this is why i've taken it down.

I would have thought a closed group where you add " friend " would ensure that the

group stays safe and secure ?

Neil

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I want to get up to date information and to give out up to date

information, along with our petitions, surveys, meeting dates etc.

Luv - Sheila

Hello, is TPA adding freinds, or having a page or a private group. The page

with 'likes' is the one where random people can post. The friends only one

means that TPA would have to add before they could post and the private group

is for groups who only want member of that group to be able to see their posts,

not even friends who are not members would see them. I use Face Book for a lot

of special needs support groups, to get up to date information. I find it

extremely useful. Jan x

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Can you make Facebook so that only those can be approved as

'friends' who write a couple of lines to say what their thyroid problem is -

like they do when registering to join our forum before we will approve them.

Luv - Sheila

Unfortunately the setting only allows all to post or none, so means any random

" like " could post stuff on the wall.

Like this forum we need to be able to control the " quality " of stuff

posting to keep the good name of the TPA.

Cheers

neil

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Sure will Sheila

I think it's the safest way.

It's already there, people should be able to find it if they search for Thyroid

Patient Advocacy.

Cheers neil

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I've just recently joined a group on facebook and it seems to be a lot more

'selective' regarding people who can join, rather than a page with 'likes' that

seems to be a lot more open, as Jan mentioned. I also set up a closed group so

my family members can look at old family photographs and comment on them (or at

least I HOPE they are the only people who can view the photographs, but who

knows these days???) My other 'friends' cannot see the photographs as they are

not members of the group. I think a group is the way to go on facebook if you

want to confine content viewing to certain people.

P

.......................

> Hello, is TPA adding freinds, or having a page or a private group. The page

with 'likes' is the one where random people can post. The friends only one means

that TPA would have to add before they could post and the private group is for

groups who only want member of that group to be able to see their posts, not

even friends who are not members would see them. I use Face Book for a lot of

special needs support groups, to get up to date information. I find it extremely

useful. Jan x

>

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Hi Neil

Just a little thing... it says 'Thyroid joined Facebook'. TPA will be call

'Thyroid' every time you respond to posts. Could you possibly change that to

TPA. Perhaps this is caused by the title (I'm not sure)... perhaps we could be

called 'TPA' (Thyroid Patient Advocacy), which is already in the logo.

Just a thought!

Jacquie

_______________________________________

> Sure will Sheila

>

> I think it's the safest way.

>

> It's already there, people should be able to find it if they search for

Thyroid Patient Advocacy.

>

> Cheers neil

>

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What is the point of TPA's Facebook page if members cannot write on it at all?

I wanted to add TPA's Conference on 11 June and also the Register of

counterexample links but cannot. This seems to be set up as a PERSONAL page and

NOT a GROUP page! If NEW people cannot see what we are about, they won't join,

as it is not visible to the public!

Another issue is that some people do not want to have everyone in their friends

list knowing that they have a thyroid or other condition. The only way to join

TPA on Facebook is to become a Friend. This is NOT how it is done with STTM and

other thyroid groups.

Please, please can this be rectified immediately. It would be better to have a

Fan or Group page AND having MORE than one person in moderating may be the best

way forward. To NOT be able to communicate at all on TPA's Facebook page is

pointless to everyone who has joined, and self defeating!

Jot and I have both offered our services and would be more than happy to help.

Perhaps the best way forward would be to start again with a Fan page or Group

page and Jot, I and whoever else can monitor it!

Love

Jacquie

>

> Here's the link, Lillian...

> http://www.facebook.com/profile.php?id=100002414622198 & sk=info

>

> Love

> Jacquie

> _______________________________

> > How do I join - how do I get to the page please?

> >

> > Lilian

> >

>

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The Facebook page that I set up is set up as a " Personal " page to allow Sheila

and myself to control what information is put there and is Sheila's wishes that

users are not able to post anything they wish.

The purpose is to raise awareness and not to replace the Group.

I have Sheila's full authority to do so and don't appreciate the negative

feedback that has been going round lately.

Neil

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Hi Jacquie!

Neil is in the process of

finding what is best for our TPA Facebook page at the moment, and we need

positive feedback. I understand that Neil has used Facebook for many years and

the one thing we have decided is that we do not want anybody and everybody to

come on board and to write exactly what they want, without some form of

moderation.

I speak from the bottom of my

heart when I tell you that in the past, we have experience of what can happen

to an unmoderated thyroid forum and we will never risk our good name and reputation

by going down such a road again.

The most important thing

about a Facebook page is that we guard the good name, reputation, respect and

integrity of Thyroid Patient Advocacy. To keep these, we cannot and allow open

access to all. There are people/organisations out there in the ether who are

waiting for the opportunity to rubbish our work and my name in particular, and

by giving them an open page to write on, could easily do this.

I think there was a

misunderstanding between Neil and myself about what I need posting and what I

do not, so it is incorrect in that the only information to be posted must come direct

from me. I know nothing about Facebook or even how to use it, and am too

busy to spare time so we need somebody like Neil to administer it and look after

it for us.

What I would like to see is a

moderated page so any messages posted have first to be approved by chosen

moderators - in the same way our Thyroid Forum messages are moderated. The

Facebook page should be open to all those interested in getting out information

regarding our own specific thyroid problems and lots of the information we are

finding, and if anybody wants to discuss other topics, they should go

elsewhere.

Jacquie, thank you for

stating that you wished to post the information I sent out to members this morning

on to our Facebook page - that is exactly the kind of message we need to get

out. However, I see that since this morning, you have put up a new Facebook

page for TPA yourself, but as this has not been authorised by the Trustees,

please would you remove this with immediate effect.

Let's all be patient, this

will sort itself out eventually. We need Neil, along with yourself and others

with experience, to give appropriate feedback, to enable us to find what is the

best way to go to meet our particular circumstances.

Now that we are a Registered

Charity, permission by the Trustees is needed, before any changes can be made.

We are holding a Meeting on 12th June and this topic will be placed onto the

Agenda to be discussed at that time.

If JOT, yourself and Neil would

like to help monitor the Facebook page, please let me know.

Luv - Sheila

What is the point of TPA's Facebook page if

members cannot write on it at all? I wanted to add TPA's Conference on 11 June

and also the Register of counterexample links but cannot. This seems to be set

up as a PERSONAL page and NOT a GROUP page! If NEW people cannot see what we

are about, they won't join, as it is not visible to the public!

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My fault I guess, but you got this mixed up Neil - see message

that I have just posted to the forum. Sorry if I didn't make it clear, but it

is a 'moderated' Facebook page we need in order to stop those who do not wish

to discuss thyroid problems from taking it over and writing what they wish.

Luv - Sheila

The Facebook page that I set up is set up as a

" Personal " page to allow Sheila and myself to control what

information is put there and is Sheila's wishes that users are not able to post

anything they wish.

The purpose is to raise awareness and not to replace the Group.

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Hi Sheila

Thank you for sorting this out. I have also been on Facebook for many years and

what I did was set up a TPA Facebook Group page a few hours ago which is

moderated by myself and Jot so far, ie, no one can write down ANYTHING without

joining first and if they write anything inflammatory it can be deleted with

immediate effect, and they can be removed from the Group. It has three choice

of permissions:

OPEN - Anyone can see the group, who's in it and what members post.

CLOSED - Anyone can see the group and who's in it. Only members see posts.

SECRET - Only members see the group, who's in it and what members post.

At the moment it is on OPEN so that people can see events, register of

counterexamples etc. but they cannot write anything on the page at all until

they have been approved to join the group by a moderator. Once approved, they

can be removed just as easily. This is how Janie and the other thyroid groups

operate.

If you want, I can put it on SECRET until after the meeting with the trustees

(this means that any events etc will not be advertised openly) and you can

decide whether you want to keep it or not at a later stage; or, if you prefer,

to delete it entirely. To be honest, it is not a job for one or two people as

it is very time consuming, so having more admin would be necessary.

I have been sending out the tweets you requested on Twitter for some time now

and felt that TPA on Facebook was not being utilised to it's full potential, as

it was being represented as a Person, and not a business/charity.

Please advise if you would like it to go SECRET, or for me to delete it

entirely.

Thank you, Sheila.

Love

Jacquie

>

> The most important thing about a Facebook page is that we guard the good

> name, reputation, respect and integrity of Thyroid Patient Advocacy. To keep

> these, we cannot and allow open access to all. There are

> people/organisations out there in the ether who are waiting for the

> opportunity to rubbish our work and my name in particular, and by giving

> them an open page to write on, could easily do this.

>

> I

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I posted " hello, looking forward to the TPA meeting " that didn't go on, I've

unfriended the page, if it gets sorted out. Even a page let's you see posts, its

useless as it is now and I've recommended it to people too- a shame.

On Sun May 29th, 2011 12:46 PM EDT Sheila wrote:

>My fault I guess, but you got this mixed up Neil - see message that I have

>just posted to the forum. Sorry if I didn't make it clear, but it is a

>'moderated' Facebook page we need in order to stop those who do not wish to

>discuss thyroid problems from taking it over and writing what they wish.

>

>Luv - Sheila

>

>

>

>

>

>The Facebook page that I set up is set up as a " Personal " page to allow

>Sheila and myself to control what information is put there and is Sheila's

>wishes that users are not able to post anything they wish.

>

>The purpose is to raise awareness and not to replace the Group.

>

>

>

>

>

>

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Jacquie

As Sheila has already stated, I've been involved in setting this up for some

time and exploring the appropriate options for TPA.

Therefore I would appreciate your support in the efforts I have already

undertaken and remove the group that you have created.

There is no need to duplicate and confuse the situation any longer.

As per Sheila's wishes I've created a " group " within the primary TPA membership

on Facebook.

It was always the intention to have such a group, I had to be sure the necessary

security precautions could be made before opening it up to the world.

I have added you and Jot to the " Admin " group so that you can both help me

moderate the content.

Neil

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Hi Janine

Your message actually came through directly to me via personal message,

therefore would not display on the main wall.

I have made adjustments to the page to allow all group members to interact with

each other and have assigned some further moderators to help keep the content

clean and useful.

I hope that you come back to enjoy the site for youself soon.

Neil

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