As some of you know, this forum user copied some comments from this forum and pasted them into her Facebook page 'Restless LEG Syndrome Australia - share your story'. This is strictly forbidden and she did this without the permission of any of the contributors, RLS-UK or Health Unlocked (HU). We sent her messages via HU, Facebook and email to ask her to remove them immediately and she has not replied or removed them. Some of the contributors have also had no response. We know that secretgarden was ill so we delayed taking action in the hope that this would give her a chance to respond. However, we have still not heard from her so we have restricted her access to HU and deleted her post which asked people to contribute their RLS stories for a book. If she does remove the posts, we will review these actions. Obviously, we have no means of deleting the entries she copied into her Facebook page.

Rosie (tiredparent)

RLS-UK and forum administrator

35 Replies

  • I have been looking into the facebook rules, to see if there is a way to contact facebook about this. I cant find anything yet that covers this type of violation.

  • rurely its against Healthunlocked rules, and if not it should be, there's are personal comments about our health. Also Heathunlocked is not a facebook group is it Rosie ??

  • sorry, that should be "surely"

  • Sorry I forgot to mention that HU are also looking into this.

    Tallula - I'm not sure what you mean by your question. No HU is not a FB group.

  • I suppose that's the problem with tinternet. Whatever one writes is fair game for anyone!

  • Rosie, i meant if H/U is not a facebook group, then surely their rules dont apply to H/U, so if Secretgarden has broken H/U rules, what happens to her in that case ?

  • I don't know but it is in their hands now. It is certainly an unusual situation!

  • FYI, in the terms of use on HU, it says in section 10:

    The entire contents of Our Site are protected by copyright, database rights and other intellectual property rights which are owned by us or our partners including patient groups. The contents of Our Site may not be copied, displayed, downloaded, distributed or republished other than for non-commercial individual reference with all copyright or other proprietary notices retained, and thereafter may not be recopied, reproduced or otherwise redistributed.

  • This seems to imply that one IS permitted to copy for non-commercial individual reference. It seems to me that putting comments on Facebook is a non-commercial individual reference. Did she indicate where they came from? I just got in trouble on another board when I replied to an inquiry about Parkinson's treatments which do not involve prescription drugs and I mentioned John Pepper's book. I was told that advertising is not allowed. I was not advertising this book, but trying to identify a source of useful information on the subject under discussion. This experience made me sensitive to prohibitions on discussion boards and whether they are justified. What exactly does non-commercial individual reference mean? I think we should encourage the dissemination of information rather than restrict it.

  • She is writing a BOOK so that is commercial. She is looking to profit in some way from this, so that makes it commercial.

  • Where can I find the Terms Of Use?. I looked under posting content in the support center and it says specifically that "Any content posted on the HealthUnlocked community can be read, used, reproduced and cited by other users of the site. You have the option to delete content you have posted." This directly contradicts the Terms of Use which you quote.

  • I am still posting on her fb page to get her to remove the comments. I have emailed her yet again this morning. She knows what she has to do, she has left a comment on her site in response to someone else asking her to remove the comments. That was about 14-15 hrs ago, so she is aware of what we are asking. Why she isnt doing it, is a mystery...

  • well in that case Rosie she has broken a rule or two, and if shes still a member here, she can carry on copying our comments

  • Anyone can view comments on the forum - you only need to be a member, ie log in, in order to add comments or send private messages. Therefore banning someone doesn't stop them being able to view the site.

  • Thank you for that Rosie

  • Ive been looking on her site...I cant see whats shes done. can someone explain please!

  • shes taking our members comments, putting them on her f/b page, and calling them "her blog" im guessing she has not told most members this, some have our usernames on them, none of mine are on there, but its decietfull to do it, and its not just from her thread about her book, its from all threads on this forum !!

  • ahhhh...I see rahmin and elisse..I wasnt looking closely enough!!

  • Sorry but i don't understand what the problem is. The identity is protect and sharing experiances should not be prohibeted. I have done the same copy & paste with other friends in another .... blog? ... and translated because it is an Italian group. Is it not allowed? please confirm it because if so bye bye!

    I want to share experience with other lucky people like us. I can tell them something that could help or they can tell me something that could help

  • The HU rules say:

    'The contents of Our Site may not be copied, displayed, downloaded, distributed or republished other than for non-commercial individual reference'. To my mind, the words 'individual reference' mean that they cannot be posted en masse on a public website such as Facebook, especially without the consent of the individuals who posted them or HU. It is not clear why Secretgarden has not removed the messages as requested but she has stated that she intends to write a book so she may be gathering information and stories for commercial purposes'. Agreed, we want to share information and experiences but I don't feel that secretgarden has gone about this in the right way.

  • It's not on, you know the rules when you join, so therefore, you should stick to them, ive just looked at her page, well i say her page, as all i can see on it of her's is the thing about her sleep study. Plus why does she have to be underhand about it, im sure if the members had been asked properly, then they would have helped, but this makes me feel like not commenting until its sorted, or she's gone from the forum

  • The Welcome Page for the Restless Leg Syndrome Community says "Spread the Word. Promote Health Unlocked by liking it on Facebook. 5795 people like this . Sign up to see what your friends like." This does not sound like HU does not want members to post on Facebook. If HU considers posting on Facebook to be "posting en masse on a public website", why then on your welcome page, so you encourage people to "spread the word and promote Health unlocked by liking it on Facebook". I myself do not do Facebook because I have seen so much misinformation and misunderstanding spread by using it. This is a good example. Now, you people call her "underhanded" for doing exactly what you ask members to do on your welcome page. Further, the HU Support Center says on the subject of posting content "Any content posted on the Health Unlocked community can be read, used, reproduced and cited by other users of the site. You have the option to delete content you have posted." This certainly makes it seem all right to copy and reproduce material posted here. I think each and every one of you who has made snide comments about Secretgarden owes her an apology. Are you jealous of her because she has the intelligence and initiative to put a book together?

  • One of the biggest points here, is that H/U is not Facebook, thats a social media site, this forum is a support group, for different health issues.

    HU ask us to spread the word about RLS, not to use its member's comment's for your profit, if she wants to write a book, it should be in her words, not other people's words, thats almost plagiarism

  • No, i dont owe secretgarden an apology, i think i am owed one from her...for not removing my comment from her fb page, for refusing to answer our requests to remove those comments. And i am definately not jealous of her, that is a childish remark from you.

  • the point is you cannot copy and past a post word for word. You can say, "Hey, we were talking about this in a group I am in and give ideas and other tings that were discussed but in a respectful way, and copying and pasting is a copyright violation. It is not being said that you cannot discuss things that come up here, it is the "word for word" usage without the web site's or poster's permission.

  • The rules are clear and there is no doubt that rules have ben broken. H/U wants you to share the web site and the individual communities in it to help others, but posts that are mad to this group belong to this group not HER BLOG, as it was originally. But, anyone who is trying writing a book, and I have assisted in a few, knows you MUST get permission to use other material that is not originally your own. That is a huge breach of trust, since she was not trying to support anyone, only to get information. I do not see what is so hard to understand about this. It IS against the rules as Rosie said, and like I said a huge breach of trust, and just not COOL. Be careful who you talk to and what you say and what you sign. She has violated other FB rules but that has nothing to do with this post. I HAD to comment on this one. This woman is totally out of line.

  • I think you are correct that you have to get permission before you publish. But has she published anything without permission? My understanding is that she is collectring information on her Facebook page, some of which she may use in a book. Nothing has been published or is anywhere near publicaton.Once again, I would like to point out that HU says in its support center "Any content posted on the HealthUnlocked community can be read, used, reproduced and cited by other users of the site. You have the option to delete content you have posted." According to you people, there are rules somewhere which say that this is strictly forbidden. Someone said all of these rules are made available when you join. I never saw them. I am not involved in this issue except as an observer, but I had to say something because this whole thing is becoming more idiotic and senseless as it goes along.

  • we cannot delete anything that she puts on her page, we can only delete on here, so, should we not comment on here, then she cant copy it ?

  • ok. Could the administrator close my account or tell me how to do it?

    Thank you

  • That's a shame. Click on your username in the top right hand corner of the screen and then select 'profile'. Go to 'communities' and it will give you the option of leaving our forum.

  • Well i have to say something, and that is one of my comments is on that fb page, and i object to it being there. So, when you politely ask over and over again to the person concerned that you want your comment removed from their fb page, then i expect that person to do what i request.!! Rules or no rules...!!

  • Right! Rules or no rules, this is not how the "game" is played. I am dealing with copyright issues in the US and it is pretty straightforward what they mean.

  • Health Unlocked have now banned secretgarden and Daragh has submitted a complaint to Facebook and is awaiting their response.

    We asked HU to clarify their position in regards to copying and pasting from the forum and this is what they said:

    'It is not permitted under our terms of use that information in HealthUnlocked be copied into third party locations. Here is where that is stated: "You may not obtain or attempt to obtain any materials or information from Our Site through any means not intentionally made available to you through Our Site."

  • Good !!

  • I know these cars old posts but imam concerned as I shared some very personal information has it's relevant to how I am. If this is used by someone for any reason I would feel a total breach of trust.

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