I have noticed our posts Can be shared on/to various forms of Social Media whether you are a member of this community/forum or Not. I don't know if that is something new but it is something i have just become aware of visually.
when i arrived here i thought this would be a place to talk to and share problems with those on the same journey where one could talk at ease and in confidence rather than sharing it with the world or quoted to the world by complete strangers or those possibley with less than honourable intentions which isn't i feel the members intention or wish when talking to another with Parkinson's.
I can see what you mean. This function is across our entire website, if the forum thread is private, a member can still only view the thread even when shared on social media. I have discussed this now with our web team and I'm asking for some more clarity around it. Keep in mind some threads can be read by the public, regardless of whether they are a member or not so if you would like to post privately it is best to keep it to the appropriate forum. I'll keep you updated on the social media share function that you've highlighted.
I for one did'nt realise posts were aired on social media, is that all posts in certain threads or it all posts in ALL threads. I thought all posts and threads were totally between one member to another member and not for any others but for PWP on this site, so that you could speak freely and in confidence without someone else knowing what you are talking about.
Does this mean we will have to private message each other instead to keep it private!
No there was an ability to share posts to various social media's of posts in most area's of the forum I noticed it this morning and it has now been removed.
I do agree with you some area's perhaps should be members only
I'm not too bad, don't like to grumble. Worse time usually is first thing on morning till meds kick in then i'm ok to a certain extent. Like the expression 'chugging along' sounds better than 'shuffling along' means you are a bit quicker!
I am concerned not only about the social media issue, but the fact that people who are not members of Parkinsons UK forum can just log in and read the messages. There is a lot of personal stuff on here I just wondered why it had to be accessible by "guests" rather than just members.
I do realise we have a responsibility ourselves, but people myself included , can over share. Employers, DVLA, partners, neighbours I could go on (I generally do) can all access this site read messages, a flippant remark could bounce back.
I just wondered if members would prefer the forum to exclude "guests".
I understand people's concern but I think it is important that PWP and carers, family and friends can look round the forum, search for areas of interest, decide over time whether to register and contribute/ask for support.
I did this 6 years ago before I plucked up the courage to take part and seek help.
How much people want to identify themselves is a personal decision.
I have chosen not to post a photo but am available to private message and have given some trusted posters my phone number and name to offer them support with obsessive compulsive behaviour caused by DAs.
Equally, some members offered me that support when my life was in ruins.
It is up to members whether or not they wish to reveal themselves or stay anonymous but I think the openness of the forum is an important part of the support it offers.
Perhaps a warning needs to be given as part of the registration process about non-members being able to read posts and to think about whether or not to give identifying information such as photos...
You make valid points, yes perhaps a warning that anyone can access information without registering would be very helpful. I appreciate that some people may want to browse first and the forum needs to welcome and support as many people as possible with PD issues.
On reflection I wonder if this forum can offer a "safe" environment in which to post , as it is so easy to access members disclosed information, full names, photographs etc as joining the forum only requires a few false details and an email address, so in reality why worry about "guests" browsing.
Yes G.G a warning and advice would be welcomed. We do need to be aware that there are vulnerable people on this site/forum.
Thanks for your comments, as goldengirl says we do have some parts of the forum open for people affected by Parkinson's to browse, even they don't feel ready to join the community at that stage. Some threads do get more traffic than others and often these are threads that have really useful tips and advice, and so non-members can and do benefit from this information and advice too.
We do have some guidelines for staying safe in our forum rules, but appreciate your feedback and I will have a chat with the team about making sure people are clear and aware of this. Part of our role as moderators is to look out for anything that may be concerning in terms of sharing of personal information, as we ask people not to share the contact details publicly. As always please do let us know if you are concerned about a particular post by reporting it or emailing us at [email protected].
I'm afraid I was one of those "guests" looking at the forum before I joined. As a newly diagnosed PD (spring last year) I was frightened to death&v scared. I took to reading the forum to see what it involved &found it v reassuring to read other PD peoples down to earth comments. I don't personally know else with it. It has taken me now to pluck up the courage to join
the reason i posted the thread wasnt because i didnt want people reading the website.
i posted the thread because there was buttons at the bottom of almost every page that allowed what was written i.e convosations between users to be shared to various social media websites, that included members only area's of this website.
Not everyone on the internet has our interests at heart.
the option to share to social media websites was quite rightly removed.
oh I see. Sorry I misunderstood. I do see what you mean.. Still learning my way around all this as I've never used any social media. But I have found the forum really helpful
Is there no way to stop our conversations coming up in google searches. Type in a word in google relating to PD and you sometimes get an extract of a conversation from this site. I saw some of my posts after searching for information ?.
I am sorry to hear about your concerns. As you both know the forum is a fantastic resource with lots of advice and tips. We want this to be available to everyone who needs information and is looking for help. Lots of people tell us how helpful they have found the forum when they have a question or are looking for some tips, particularly if they have been recently diagnosed or are concerned about a family member. Many people prefer to browse the forum without joining and we are happy for them to do that, and it is also important for people to see what it's like before taking the step of joining.
For this reason the forum is a public place that everyone can see and will come up in search engine results. The social club area of the forum is for members only, but we would still advise people to be aware of their privacy when posting here too.
We do manually approve members but give people the benefit of the doubt, so even in members only areas people may not necessarily be who they say they are so it's important not to share personal details such as email addresses or phone numbers publicly. We keep an eye out for this when we are moderating the forum.
I hope this makes sense, and explains why the forum is kept as a public space.
