With all respect to for your work as a moderator, I have to question your post regarding birthday wishes. The guidelines say "The PMRGCAuk Community is a safe, supportive, informative, and friendly community for patients, their partners and carers. Your participation in this community should be with respect and honesty, and in the spirit of supporting and learning from fellow users."
How does a friendly birthday wish with a supportive comment to a PMR sufferer violate this guideline? In my experience, part of the burden of PMR/GCA are the feelings of isolation and depression, and are just as worthy of being taken seriously as physical symptoms. Surely the loving kindness of a birthday wish could be considered as legitimate under the guideline mentioned above.
Sincerely, Coda
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coda123
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I agree Coda123. It does make me wonder, if the birthday wishes had been for... another (perhaps more seasoned, valued) member(s), would it have received the same reaction/hand slapping? ... just a rhetorical question, no response/comment necessary.
In case you missed it.... this was the response to a Happy Birthday message:
"Sorry folks. This is not an appropriate use of the public forum. While we have every sympathy with people's personal struggles with PMR and GCA, this forum is just not the right medium for social interaction of this nature. Please read and observe the guidelines.
Coda thank you so much for this. I am so sad that it has come to this. PMR is the most ghastly isolating illness not only from the pain and DF but the depression that so many sufferers get. To have a HAPPY BIRTHDAY thread is so beautiful and now it is spoilt by unnecessarily harsh (Imho) moderating. I mean come on. I have to say that my birthday was awful ...PMR scored a lot of goals and the thread of happy birthday was one of the very few moments of happiness I had all day. Is this not the purpose of such a forum????
The defenition of supportive, from the Cambridge dictionary is:
"showing agreement and giving encouragement"
Now, if we look at support, from the same dictionary we get:
"to help someone emotionally or in a practical way"
In wishing somebody a happy birthday, I feel we are giving them support.
if this is not wanted, they I would suggest legal advice is sought such that only those things that are wanted can be posted. Maybe have all posts moderated before they become public.
Many of us are unable to give good advice, but can be be supportive and give support?
I agree with the views expressed already, especially (I must admit) as it's my birthday on Monday and the more best wishes I receive, the more psychologically boosted I will feel! Thanking you all in advance...
April fools day for me!! And.... I am applying for my bus pass soon. (used to get it at 60, now have to be 65!) Can't wait to get my pension, not long now, September 2019!!!!
Same here, so many hospital appointments to do, £5 usually for parking. I can catch a bus outside my house that goes straight to the hospital! Result!!!
I do sympathise with the sentiment shared here, however I also understand the unenviable task of the moderators and why they need to “moderate” the site content. With 2328 active users, if each received just one birthday wish that would be 45 posts/week. Add posts about pets, grand children, clothes etc. etc. I do understand the necessity to moderate content and keep the site relevant. I don’t envy Kate.
It’s a tricky one, there’s a fine line between being informative, supportive and providing a real social link to those who have lost theirs and inadvertently making people feel shut out. So, I’ve been a member of various fora for health and mostly non-health. What invariably happens is that there becomes a well established social group that publicly sends wishes, shares jokes and comments, rushing to the side of a member in distress. People not in that group or who are new are excluded and can feel they don’t belong, especially if they don’t have the confidence to try to join in or just don’t think it’s them. It’s not a reflection on the members, but the nature of the thing. A defiant, carbs blowing birthday meal post is ok but as I said, it’s a fine line and perhaps more use of private messaging needs to be made. No doubt this will make me unpopular (if I ever was) but I felt I should speak up.
What good is a private message to someone in such distress? surely seeing a long list of help and support is better that the odd one here and there? There are a lot of posts on here that do not "conform" to the so called guidelines, but they don't appear to be moderated. I think, IMHO, that the site is getting very elitist in what is acceptable and what is not. I totally agree with the majority of the comments above. I will no longer post on here as I fell that there is a degree of bias towards certain people.
Janbo, I tend to agree. My fear is that the recurring controversy around Appropriate / inappropriate content is shifting the focus even further from the usual (happy and mainly tolerant?) balance - and with members of either opinion (on / off topic etc) either stepping back or migrating.
The only place I know to migrate to is Patient where I used to spend more time until it became such a pain to use (deadly slow). I know PMRpro keeps mentioning another site and I seem to remember when I first started this PMR/pred journey that I signed up to some other site as well, but I never heard anything from it, whether I was even approved as a member, or now even how to find it again. I know I've been at fault for off-topic posts, and I apologise, although I think I always tried to make an effort to indicate the relevance to my medical condition. But on seeing what's happening here I don't think that's enough and I think from now on I'll try to stay on topic. Will try to remember!
On the other hand I have private messaged about this situation and received no reply, so....?
I agree Heron, this is probably the best resource of strictly medical On Topic PMRGCA content and (informal) advice - and also a goldmine of social / emotional support when people are struggling to cope with symptoms / side effects / Medics etc.
That said: it seems that quite a few of us also appreciate the therapeutic value of the Lighter / Social Side (some newbies included?). I think the crux of the dilemma for the Mods and many of us is: what, exactly, constitutes On or Off topic / Appropriate / Relevant content or not? And.. at any particular point in a Post or thread. And.. how to moderate as objectively as possible in the interests of All in a growing internet Social Health Community?
Maybe the answer is in the slightly ambiguous term 'Social' Health Community - and how that is interpreted from a range of diverse personal perspectives?
On the Patient site there is in fact a forum where people can interact in a less heavily moderated way. I signed up for that, because I was at the time interested in alternative treatments which were not allowed to be discussed, but soon left because it gathered in everyone on Patient and hardly anything was relevant to me. A subgroup of a group I was already following would have worked better.
Currently there are 4 threads re Happy Birthday (to one member) maybe if comments were added to existing threads? And not multiple threads. As JohnnyQ calculates, that’s an awful lot of Happy Birthday threads, which push ‘PMR/GCA’ threads down the page.
It is the nature of things that threads will become tangential, but I do think they should at least start in the general area of PMR/GCA.
I know 🙁 Reminded me of one of my old boys (long since departed aged 21!)
I can only suggest we’ve entered the zero tolerance zone. I understand both sides of this, one mod on her tod has her work cut out with the number of posts generated here, both day and night.
Hi Soraya, ...but surely a HBD post does not require (nor does it deserve) the same level of scrutinisation or Moderator attention, as a more serious/controversial post.
And, I'm sorry but the issue was not that there were 4 HB posts, it was that the HB post, in and of itself, was inappropriate. So rolling them into one would not have mattered.
And again to your point that they should all start out relevant to PMR/GCA, and then it's okay for them take on a life of their own and go off track; I do not believe that to be a true statement: There have been several posts that started off being "relevant" (based on the guidelines) but as the comments became more and more (as you say) tangential, they morphed into inappropriate.
Point 1. I agree. Unless such threads are reported? Then the mods would have to take a look. Not sure how reporting posts works, maybe the mod has to scour the entire thread?
Point 2. Fair comment. Although I don’t want to see a HBD thread for every member (45 a week?) so probably best not to have any.
Point 3, I’m saying ‘tangential’ not completely off track. I’ve seen threads that have side-shoots, often funny, but the thread in general stays on track. I’ve not been around of late for several months, so I’m not going to comment on threads I wasn’t party to, but if you say they were inappropriate.....hmm, not sure if that’s your classification or someone else’s. So less said, soonest mended x
I agree Snazzy (fine line etc). On the other hand, quite a few Newbies seem to appreciate the less formal / more social side as much as the medical stuff. But of course it's difficult to prove a case either way without some meaningful data? Either way, don't feel bad about speaking up ;-).
I have mentioned before there is another PMRGCA forum where there is provision for this sort of interaction in a separate social section. Providing people stick to that it means there is minimal moderation required by the people who have that task. If that is what you want to do - why don't you try using it for this sort of thing? Just a thought. It may take a few days to join though as the administrator is currently having her winter trip to sunny Spain! It does appear very quiet at present as there were serious platform problems a couple of years ago and many people moved here or to patient.info at the time but it is still there.
I have spent quite a lot of time this morning looking at birthday wishes - if I don't I might miss something that is "off piste" in that post. It does work both ways. It is one thing having a bit of lighthearted stuff with even 50 or 60 users, it is a very different matter when it gets to hundreds.
2328 active users in January according to Kate’s post, if there is a social forum then problem solved, mods just need to direct people to the social forum👌
I have been racking my two and a half brain cells on this , wouldn't it be easier for all both admin and users on this site who want to interact socially and read informal wellness boosting posts to have a designated link in the side bar to the actual social group linked to PMR/ GCA UK and its users.
Then being able to balance checking in on medical health facts on here then easily popping to read stories and chat to friends in an approved , safe chat room / social forum page would be more user friendly for us to do , especially for those users who find social interaction invaluable to their recovery but have difficult isolated circumstances because of their illness and possible related sight issues .
Properly promoted and easy to get to social group from the click of a button in the side bar , then all could have their needs met without impinging on others needs seems nice to me. What are your thoughts PMRPro?
I bet there would be people willing to help with some hours to help moderate too, so hopefully you , Dorset Lady and Kate are not run off your feet to do it.
There must be a harmonious solution that take everybody's different needs into consideration , or I hope so.
I think that a Facebook group is the ideal vehicle for birthday greetings and social off topic posts. When I joined this group six long years ago it was much more PMR/GCA focussed and in my opinion that’s the way it should be. Some people seem to use it as a personal Facebook type group, I’m sure lots of folk are really put off by the clique ( inner circle ) stuff that seems to keep coming through time and time again, I’m not averse to humour but long posts dedicated to someone’s “interesting” off topic story is just wrong in a HU dedicated group. As for birthday wishes, yes it’s nice to have birthdays acknowledged but we all have one and if every single one was posted multiple times it’s going to get a bit tedious. I think the Mods have a very hard job, I don’t envy them, not everyone is going to support the back to basics approach but equally many will.
I would say that the forums originally set up by PMRGCAuk and LupusUK are pretty typical - dealing with queries and advice relating to the named disorders and linked to the national charities.
There you go E! Too political for me! What's going on here! Dumbo male me!!
I have never seen such a gaggle of bellyachers. What are rules and guidelines for if everyone decides their way is the right and best way?Someone needs to steer the ship. Those are the administrators. Is it so difficult to abide by those rules ( much as others may not like them)? As a fairly newcomer to this site, I see a "clique" group (you know who you are) who take up the bulk of the posts on this forum. That in mho precludes those of us who are not in the "clique" from particpating with posts as most of the posts I see here from those in that group that mostly shuts us out that only want to discuss our difficulties with these conditions. I feel sorry for those administrators that have to put up with all this bellyaching.
Good point about the impact on newcomers of a lively prevailing culture. I would probably have run away tbh. I have noticed a number of new names and old names returning lately. We do make a point of welcoming newcomers though, always have.
And I think the opposite is true...that a shy and troubled newcomer who sees all the caring, friendly and supportive messages is more likely to be drawn in than put off.
What's more intimidating? A dry, cold list of medical complaints and linked to research papers, or a bunch of people laughing and crying together about their experiences, trials and tribulations dealing with their condition.
If the former is all that survives, then this is going to die on the vine. If the latter is allowed to mix in, then the medical knowledge gets disseminated in an environment where user feel they can ask all kinds of questions and get information from people who care enough to share what they know and serve it up alongside the sensitivity so many community members seem to need.
Put in a rather blunt New Yorker kind of way, who's the site for, anyway?
I don't agree. I signed up to HU years ago because it offered dry, cold lists of medical complaints linked to research papers. I did not sign up for, or expect, birthday wishes from people I've never met who profess to love me.
I've delayed engaging in this ongoing argument because it seemed so overblown, but at some point one has to put one's cards on the table. I just feel very sorry for the administrators trying to resolve what should be a simple issue.
Sorry can't agree. The patient.info forum is nothing but dry stuff by your classification. It was the first PMRGCA forum and the one from which the others, not least this charity and its forum, stemmed. Any squabbling would be stopped in its tracks and repeat offending would result in a ban. It is there and growing again despite some serious platform problems - people get the answers there. They do here, but at present there is too much "noise" and it is hard to find peace and quiet to listen. I'm struggling - heaven knows how people looking for anwers cope.
Yikes! Cliques..? I'm confused. Do you mean members who Post a lot or those who have lots of Followers - or both? Or something else? Answers on a Postcard please?
I used to work in a public library, in the children's department. We had a monthly staff meeting (one to two hours) where even the part time people like me were called in, often with pay for extra hours depending on our shift. At that time, after our usual sharing of departmental issues and discussion, there would be a birthday cake for whoever had birthdays that month. The birthday cake consumption would take no more time than our normal mandated afternoon "break". We shared what needed to be shared regarding our work, and even part timers like me had equal opportunity for input. Then things changed. First we were told no more birthday cake (this was funded by ourselves, btw, and we brought our own tea or coffee). Then came a time when the branch head would come in and talk at us with very little opportunity for response, using up all our time. Then she decided this was a duplication of her effort as she was doing the same thing in the adult department so we would now all have to go to a joint meeting and part time people were only invited if they happened to be scheduled at that time. As for departmental meetings only the people who did children's programming were able to meet, often difficult for them to find a time when they were all present. As this was going on we gradually also lost the out of work socializing which went on and kept us a cohesive happy group and made the workplace a pleasure.
So maybe what's happening here is a perception that birthday cake (which can be viewed as a symbol) is taking over from the main purpose, which is sharing of our specific problems related to PMR/GCA. So this has to be reined in. But we do risk the loss of what makes this such a sharing and caring community. And if there are a handful of people at the moment who have serious special needs I think this needs to be recognised.
I DO AGREE THAT MORE USE NEEDS TO BE MADE OF CHAT AND PERHAPS AN IMPROVEMENT TO THE SITE WOULD BE TO MAKE THE LINK TO CHAT MORE OBVIOUS.
Mmm.. In this context I think 'handful' (of..) is intended to be a collective noun, so my money's on 'have'. A bit like the Police HAVE arrested a man? But.. a flock (singular noun) of seagulls HAS landed on the beach. That's my best shot
p.s. that's my understanding of modern British English Grammar Usage - for wot it's worf
Fibromyalgia admin put up a post end of each month for following month for anyone to post thier birthdays or birthday wishes and this then gets posted under topics .
I agree with Coda,emotional support is much needed when any of us are ill,l am sorry Linda if your birthday was spoilt ,l hope you can feel well supported anyway,please don’t be upset,you are so loved as you can see by all of our posts,l hope you feel better very soon ,much love,Patricia xxxx.
I totally agree. I have just "reported" my feelings regarding the posting today (I think) of a beautiful picture of a cat with a buddha statue. Very calming and all it got was the ability to reply switched off and a rebuking message. There was no long, lengthy and often irrelevant rambling on and on, just the photo. Bit harsh ......................
Hmmm - yes I hadn't thought about that. Engage brain before opening mouth (or typing) springs to mind! In my defence, it was the rebuking message that did it. With apologies to all/any of those I might have offended, I will now disappear.
Please don’t disappear borednow,l loved your picture of the cat and Buddha ,l guess we have to refrain from posting those heartwarming pictures now xx.
I didn't post the picture Grants148 but thank you for asking me not to disappear and thank you to the person who did post it. I found it very soothing especially at a time when I seem to be warding off my first flare. Ah well, onwards and upwards. Have a lovely day.
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