Just to let you all know that secretgarden has finally removed from her RLS facebook page all the posts which she copied and pasted from our forum. She said on her FB page:
'Apologies to those from Health unlocked All items have been removed and I will not use your site again. I will find sources of information from elsewhere in the future'
RLS-UK and some of the individuals whose comments were copied spent a considerable amount of time trying to resolve this with Health Unlocked, Facebook and of course, secretgarden so it a big relief that finally she has taken the posts off. Thank you to everyone who helped with this.
Rosie Braidley (RLS-UK)
Written by
Tiredparent
Restless Leg Syndrome
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19 Replies
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YAY, we did it.....
Thank you for letting us know Rosie
I love to share the misery of RLS.
Unfortunately, it's boring conversation to everyone around me.
I like to talk about RLS to anyone who will listen.
I want someone to invest some money into a study of RLS.
We all need a cure worse than we need our privacy so
for me, it doesn't matter who knows what and who sees
the information that she posted. If they see it, tell someone
else about RLS... it can only help the cause.
I'm well aware that every single thing that I say online in
any forum, panel, or group is available for the world to see.
I'm open, have no shame, try to make good decisions and put
some time, thought into my responses so that others learn or
form their own opinions.
The bottom line is that RLS is miserable. If I had a megaphone, I
would shout into it that RLS is wrecking who I am and the lack
of sleep from RLS is causing a ton of medical problems that will
kill me sooner than later.
I want to be the first one cured. I want someone to pick me up for
a study, help me, tell me what to do so this can subside and I can
be free of RLS symptoms, to live my life that has a lot of years left.
I don't post on here but i sometimes do a reply- like now. Yikes - you have hit every nail on the head. I have got used to baring my problems to psychologists and pyschiatrists in private that now i don't give a damn who knows because i need respite from this pain. I don't own this condition and there doesn't seem to be anyone about to cure it without knowing what it feels like. I want anyone to take an interest because nobody I know does. Shout it from the rooftops - we need help. Thank you Yikes.
Totally agree yikes! Anything written on the internet really is fair game for anyone. I wouldn't care if something I had written on a public forum was used by someone if it might help someone else. If one doesn't want it repeated then don't put it on the www!!!
not fair game if it is being published in a group that is a closed group like this one. Not if someone is going profit from it. I deal with copyright info all the time, since I am trying to resurrect an old web site that belonged to the RLS Rebel. I have the rights to it, but copyright laws are specific. Anyone writing a book needs to ask permission to use a direct quote from anyone.
Well to start with, this isn't a closed group........anyone can join .....and if you read the privacy statement it clearly says if you are not comfortable publishing something that the whole world can see (and it can be used by anyone as we don't copyright every word we write), then dont publish it , or change your privacy settings!
Well to start with, this isn't a closed group........anyone can join .....and if you read the privacy statement it clearly says if you are not comfortable publishing something that the whole world can see (and it can be used by anyone as we don't copyright every word we write), then dont publish it , or change your privacy settings!
If you look back on Tiredparents post on this, you will see your answer. It is NOT allowed to use stuff on this site. If it was allowed then the admins Tiredparent, The Chair and HealthUnlocked would have not made all the efforts that they did, to get them removed from secretgardens fb page. This is old news now and i dont think is worth going over it again.
Seeing as the post I replied to was only 2 days ago it's not old news. It may be " not allowed " but it's not possible to police the whole web so if you don't want stuff used .....don't publish it! Simples!
You are right no one can police the whole internet, but if anyone else on here is abusing the rules, then they have no respect for their fellow RLS sufferers or for this forum. simples.!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Anyone writing a book needs to ask permission to use a direct quote from anyone.
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