Why have Mark Benjmin's posts been deleted, please? He is a highly respected member of this community, a fellow sufferer, who has been a guest speaker at PMRGCA society meetings as I understand it. Mark has also written and published a book, the proceeds of which benefit the PMRGCA charity. What moral justification can there possibly be for immediately deleting before folks have time to read? Why can the online community here not also benefit from his sense of humour which is so important to all of us who suffer? The forum is a highly valued source of support to all sorts of people and heaven knows, in our position, we could all do with a laugh from time to time. Never forget the old adage that "Laughter is the best medicine"
I don't very often wade in with the disgruntled brigade online, and with my daughter's wedding coming up I've better things to do right now tbh BUT this makes me quite cross.
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sennetta
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Yes I discovered that myself last night! My reply has been deleted from my account as well.....which is a pity because I was supporting the action taken!
I should have copied and pasted .......lesson learnt for future!
That’s not a problem. My fault I guess as I linked your post to another. Plus, didn’t think that if it was deleted, my reply would be as well, just assumed it would remain in my profile.
Why has your reply been deleted? This site is getting ridiculous, it's more like a dictatorship than a freedom of speech. It was good to hear from MB yesterday, a bit of light hearted banter, and he has been stopped dead in his tracks. I'm outta here!!!
It hasn't been "deleted" in a censorship way. If someone deleted a post all replies on that thread automatically get deleted too. Your choice to leave. Good luck in the future.
Can I just point out that in fact he deleted the posts himself.
The discussion with him that resulted in the deletion was carried out by PMRGCAuk admin (not individual moderators) on the grounds that it did not comply with the guidelines for posting on this forum. These are clearly posted - you may or may not agree with them but they are there to keep the forum on topic and relevant to PMRGCA. It is the public face of a respected medical charity and as such should demonstrate a degree of gravitas.
There were serious problems some months ago and that resulted in posts/replies often disappearing in a morass of comment. It made the task of moderating extremely difficult. There are other platforms for such posts, one was set up at the time as a result of the previous events. I'm sure another moderator can tell you how to find it - I'm afraid I can't.
Mark actually just messaged me to advise me that he had taken his own messages down.To a degree I concur with the need to keep reasonably on topic, but there can be too much gravitas somtimes..........
but I don't believe he should have been put in the position where he felt obliged to remove them. The off topic nature of his posts was clear from the title in bulletin and were the first I clicked on looking for some light relief. So no one would have read them by mistake unless they were incredibly unobservant
The first subject in the ' pinned posts' (top of every page right hand corner) are rules and conduct you are requested to follow when using HU and this thread.
Sometimes a post can be written that looks OK - however when that post is read by someone else and/or the moderators or admin look at it, they realise that it is not OK.
The matter is then discussed and a collective decision taken and the person informed of the reason why. There is no obligation to inform other people who use HU.
Mark messaged you to advise you that he had taken his own messages down. Surely you should accept what he told you and leave well alone. Mark would not have expected you to post referring to the matter once again.
Mark messaged me after I had started this thread and as I had followed the links in my bulletin which lead to nothing, I naturally wanted to know why. I have accepted what he told me, which is why I penned a second post as I wanted folk to know that he had removed them of his own volition and that I now knew that. By commenting as you have, you are inviting further comment. and prolonging the thread. Unless you are in a private message dialogue with Mark, as I happen to be atm, I fail to see how you can possibly know what he would expect me to do.
As this thread is an off topic thread concerning the non existence of a former off topic thread, I am surprised it is still here. So I await developments with interest, whilst resting my case.
Not doing too bad Mark, I'm on 2mg/day but I still think the PMR is still lurking because I have occasional twinges of pain in various PMR places. But then it might be old age.
Went on a weeks holiday recently and got really wet and cold just walking about sight seeing. The following day I felt as if I had flare so increased to 7mg for 3 days and returned to 3mg then 2mg. That was over a week ago and now and I feel OK. Might not have been a flare, but difficult for me to know sum times. So in summary its almost 5 years to the day when I was diagnosed and had it for a few months before then.
(again, sorry to cut across). I agree Nuff1 - all about HOW rules and guidelines are interpreted and communicated, negotiated and agreed / mutually accepted in the best interests and for the benefit of all concerned?
From my professional experience of facilitating Change and resolving Conflict in many contexts, the HOW is as, or more important than the WHY.
That's it. I've already said too much. Or have I..?
Best wishes and sleep well to all who might be following this thread and / or getting hot under the collar about it. 'This, Too, Will Pass'.
Hi sennetta ,l too was pleased to see Mark posting again,but rules have to be followed l guess . I hope he is not too upset about the outcome,l did not realise he had deleted the posts himself ,l am sure that many replies from his large fan club would have taken up a lot of time and space on HU,at least he can rest assured that a lot of us really miss his humour .Kindest Regards and take care,Patricia,Grants 148 .
so nice to hear from mark again, he always lifted our spirits, and put a lot into supporting us with his visits to our meetings, but I can't understand why, he has this problem with this site, he should be welcome, I'm always pleased to hear from him.
There are no 2 sides to the forum coin mark. There are one group that agree to use the forum within the guidelines set by HU and pmrgcauk and those who refuse to accept the changes in those guidelines. It's not a debate or discussion, HU make demands that have to be met. You can't bully a charity into changing guidelines.
It is obvious that long tomes are outside the guidelines. If you don't like it, it obviously doesn't fill you needs anymore. I found I had different needs last year and left, with dignity, I didn't stamp my feet because I didn't like where the forum was heading ...I left. This forum is not a personal "blog". The humour grows naturally out of conversations and relates to the discussion topic. It must be really hard for moderators to read the longer threads ensuring that all members questions and answers are addressed. It's not really about popularity, it's about ensuring that people with significant problems are supported. I don't wish to discuss this again. I have seen your "argument for days" - I wanted to put my view from the other side. No need for reply thanks. Best of luck.
in reply to
I am disappointed that you private messages me despite me asking for no reply. Like I explained previously things change- I spent time reading the guidelines of HU and pmrgcauk and could see the logic of these changes. I am disappointed that you sent an in appropriate reply I didnt ask for and in fact ask you not to reply.
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Good bye and good luck to you all !
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