AntiSynthetase Syndrome Support Group & The My... - Myositis UK

Myositis UK

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AntiSynthetase Syndrome Support Group & The Myositis Community of Great Britain & Ireland

Jo-Goode profile image
Jo-GoodeAdministrator
3 Replies

AntiSynthetase Syndrome Support GroupWorldwide ASS support group on facebook - please note a personal message is sent that you have to reply to, as well as the joining questions - private group (only approved members can see posts)

facebook.com/groups/Antisyn...

The Myositis Community of Great Britain & Ireland

Group personally run by Jo Goode

UK & Ireland only group on facebook - private group (only approved members can see posts) joining questions are required to be completed to join

facebook.com/groups/themyos...

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Jo-Goode
Administrator
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3 Replies
Nearness profile image
Nearness

Hi couldn’t you use something other than Facebook I am not a and will not use it. Regards Nick

Jo-Goode profile image
Jo-GoodeAdministrator in reply to Nearness

Hi Nick,

It's completely your choice, personally I feel your missing out on wonderful support network and invaluable information. Web base groups such as this are far less confidential than a private facebook group (I'm very cautious what I post here), as anyone can do a Google search & look at your comments/posts, unlike an admin vetting process of joining a facebook groups. Kind regards Jo

in reply to Jo-Goode

it’s not our choice. You are attempting to fierce us onto Facebook. We should nit be excluded from surveys because we don’t use Facebook. You should just close this site down. It’s not helping anyone. How is that ‘choice’

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