Is it only me that is finding some posts recently not relevant to the forum . This is a site for PMR/GCA not politics or a bullying site .
We all see the news and it's a dreadful world at times . We are not stupid and do not need this site being used for telling us what we already know. There are other sites more suited to those comments.
It's lovely to hear about families and fun times and share sad moments with members who we can put a virtual arm around when needed god knows we all need that arm occasionally. Expecially when a tumble is taken at a concert.
. Please people. I love the arm this site has but there's an element of wooden spoon going on here. Also again just me or has it got worse since the Chinese herbalist / belly dancer episodes .
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Chrissy1953
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I agree but there are obviously people that are more easily upset. After the original trouble Morrison pointed out that it made her very uncomfortable and said she was thinking of leaving the forum if it continues. I haven't seen her name lately I do hope she hasn't carried out her threat. She has been in a very low state recently and needed our support. We must remember the orrigional purpose of the forum is mutual support.
Sometimes this will just mean general talk about everyday things, sometimes something more specific, whatever it takes.
We must all be more tolerant of the needs of that person.
Me too, hope all is ok with you Morrison. Would hate to think anyone feels upset by any of this, so please can we all put this to bed , it needs a good nights rest.
Hi Scats, Have you private messaged Morrison? She and I have been in contact on Facebook Messenger and via email... I haven't spoken to her since Sunday, but she seemed okay at that time.
I think we must be more tolerant of everyone's needs. As you said, "...sometimes means general talk about everyday things, sometimes something more specific, whatever it takes," I think "yogabonnie just needed to talk about how upsetting SHE found the humanitarian situation at her border... maybe she was a wee bit over-passionate (for everyone's taste), but she was just taking about everyday things.
I don't personally think there was anything wrong with the original posting I was enjoying the discussion. That's the point I'm trying to make it what was needed at the time and anyone who didn't like it needs to overlook their distaste for the good of the poster. I think most of us are trying to say the same thing in different ways. We must support the post or ignore it.
Glad to hear you're in contact with Morrison, afraid I don't do the dreaded facebook.
Sorry you feel sad about the site. Yes it is primarily a health forum for PMR/GCA, but as we know life does go on outside of that, and sometimes people feel the need to make a comment. Good, bad or indifferent.
If a post is deemed unacceptable to you or anyone else then it can be reported and a moderator will intervene. Alternatively you have the option of not reading it!
We are all adults and can form our own opinions and we live in a democratic society, so as others have said it’s your choice to read or not.
Sometimes we need to ‘get away’ from PMR/GCA for just a day - if you don’t think so then the number of replies to my latest post re food in the 1950s might change your mind.
Hi Chrissy1953, I am kind of struggling to see the issue here. "All" of these upsetting, non-related PMR/GCA posts, seem to happen very infrequently; or I'm subconsciously ignoring/missing them!
I don't see this as a huge problem on our site as they seem to be few and far between.
...but as you, yourself pointed out; YOU think it's "lovely" to hear about families/fun times and share sad moments; and to put an arm around another member who took a tumble at a concert (Thank you, I did appreciate all the support!)... HOWEVER, not ALL members are necessarily happy seeing THOSE posts!
They then have the right to say, "...this is a site for PMR/GCA posts, not for posts about grandchildren, gardens, cars or skinned knees?"
Too right. There has been a spate of distressing photos (double ouch!) on the site.... but I choose to look away, not complain. And to "like" the photos of flowers.
As one of the (probably) few people who has read every single post for the last 5 years or so I think it is fair to say that sort of post is very very rare on this forum. There is the occasional very out of line offering and we had an example recently. It is upsetting at the time but it soon passes.
Personally, I think these posts that some people are objecting to are equally as important in the context of PMR/GCA as any other post - we know and acknowledge that stress impacts on how we are and for some people expressing their distress relieves it. Especially in the dark of the night when you can't sleep because your brain is churning it all about. And affirmation by others of how you feel is also important.
I follow a couple of other forums and read all the original posts there too. Because of the subject of the forum I find they are often not of interest to me and I don't "Follow" them - and never receive a notification about them. That is the option available to every single one of us. You take the rough with the smooth or you opt out of the rough and enjoy the smooth.
Blimey Pro, you've read every post for 5 years, I really do believe the Nobel Prize for Literature has been won for lesser things. As soon as I can find that nomination form, get your passport ready, you might be going to Stockholm! Honestly Pro, can I just say a huge thank you for all of your support, help and bloody good advice. Kind regards, Mike
The record is even better for patient.info - there I have read every PMR/GCA forum post since it started! When I first went there I read all the existing posts before I dared comment and suddenly there was a post about something I could answer because of my own medical science background. I joined them 9+ years ago and I don't know how long it had been going then. There have been 2 revamps since I joined so it only says "member for 6 years" or something. All lies!!!! Wiki says it was founded in 1996 but the forums were a later addition - possibly in 2002?
Whatever - without that site this forum wouldn't exist because it was there that some ladies met and decided something had to be done about the dearth of support for people with GCA and PMR. And the rest is history, as they say.
I truly wonder how many people you and the other contributors have helped over that time. I can obviously only speak for myself but golly have you managed to speak some good advice and sense into me, and trust me If I can slowly take it in you have a very rare gift! Kindest regards, Mike
Thank you - putting science/medicine into intelligble people-speak is my aim. And I find it great fun
Hi Chrissy
I must have missed these as l was getting ready to move House, l know, seems like a mad idea!
If you come across a post you don’t like, think is offensive or not relevant you can report it very easily.
I don’t read long posts, short attention span Post Chemo, my excuse & I’m sticking to it!
We had several cases of inappropriate post on the Breast Cancer Haven & we got them shut down, Snake Oil Salesmen, preying on distressed ladies with Breast Cancer!........
Kicked them into touch PDQ
We are all different & sometimes the written word comes over not quite as the writer intended, l like you don’t want Politics, World Issues & most definitely not bullying.
Help, Support, Guidance & a little light relief is what we need. Peoples experiences, offers of support to try & help us all on this journey are what we need.
We’re currently living in a rental townhouse & our bedroom is on the top floor or deck as we refer to it & we’re seeing the world with a whole different perspective!
Please please will members refrain from posting about this? As Dorsetlady has reminded us, there is a system for reporting things that concern you - you either report the post using the drop down menu, or you send me a personal message.
I agree Kate. I most certainly not let it bother me again. I feel passionate about this site and have made friends with the condition off PMR and GCA. Who understand. Nothing more to be said. Thank you so much for your support and volunteering for this cause. X
I'm sorry if I mistakingly thought as the PMRGCA homesite says that this forum is for support and sharing our journey . I do not have the energy to fight any other battles other than my own illness and so I withdraw my membership and from the forum. Thanks Dorset Lady and PMRPro. You have no idea how much you have helped me over the last 18 months.
You are very welcome, I do appreciate that you say I’ve helped you at times - and obviously that is my main aim. As it is with others on here, but but sometimes it’s good, even when you are struggling (particularly early days) to read something slightly “off the wall” - hopefully engaging and in my case usually tongue in cheek. But I do agree sometimes you don’t want anything too heavy or controversial- it’s just too difficult to deal with.
Please don’t leave us - there’s much, much more good than bad on here - and of course our main aim is to help everyone!
Please Chrissy don't leave the forum , take A breath and think of all the good you do along with everyone else to help each other , we are all here for you x
I appreciate you dont have the energy to fight more than your own battle - but others have their own battles too and need to express them in different ways. The forum is an open group on social media - there will always be things each individual finds difficult, including me I have to say, but we all have the option to NOT click on Follow and then we can ignore it. Please don't leave - as DL says there is far more good than less good on this forum.
Chrissy, please don't leave... Why? It's not worth it. The site is for "support and sharing our journey," but that doesn't mean we are ONLY EVER on the PMR/GCA journey/path.... Sometimes our journey takes us to a Billy Joel concert or to Manchester to see our grandson.
In the case of the "political" post, the writer was upset and moved by the children immigrants she saw on her border... she came to the one place she thought she could vent and express her feelings and be heard. Okay, maybe she was a wee bit over passionate and her upset feelings spilled out and upset others... but it was shut down, over and done with...
Nobody is asking/expecting you to "fight any other battles other than you own!" You have the right to pick and choose which posts you "Follow," and which ones you don't. Which ones you respond to and which ones you ignore....
Please don't leave. I think you were right, we are all pretty much saying the same thing, we are just getting caught up in our own words/language/terms.
And YES, you asked if the post from the Chinese, Herbalist, Belly Dancer seemed to change things on the site and I believe it did! I don't know why or how, but the community seemed to "split" on that one... and when we came back together, it seemed like sides had been chosen. We just need to remember who WE are and move on.
Please stay. You are articulate, passionate and you obviously need us as much as we need you! Ignore the BS that doesn't apply to you and get from the site what you need and want. The non-PMR/GCA stuff is such a small part of the site.
Thank you Universe for Mrs Nails... and please let the top person in her chain, pull their finger out! Let's get her and her Hubby in their new permanent home!
I didn't miss the chinese herbalist but chose not to comment, I feel it only encourages further discussion when I am not interested in pursuing - I missed the latest one, so no opinion from me - think I saw the headline but skimmed over it and was going to have a look but too late and what you don't see you don't miss but I am sorry for all who are upset.
I've only been on this site since October '17 but would not consider leaving as the good far out ways the 'bad'. If I feel that way out I take a step back but overall I enjoy the banter and of course the invaluable advice! I'm stating the obvious here but I think the biggest problem for 'our community' is the fact we are taking drugs that play havoc with our emotions, whether posting or reading, therefore I make my own decision as to whether I pursue a conversation or not. I do feel sorry if someone is lonely as well as ill and they look to this forum as a comfort and come across 'dispute'. I too have been thinking about Morrison but I know she has replied since. It's Poopadoop I'm hoping is okay.
Hi, Yes... I know it is. That comment was actually for HeronNS, as she had said,
"Did they {the posts from the Chinese Herbalist} pass briefly through my consciousness and then into oblivion?" ... and I was saying, I hope that they did and if they did, she should just say THANK YOU UNIVERSE!!!!! ; )
As we are living in a world where we are bombarded with news of mass shootings, terrorism, social injustice, etc I feel that causes enough stress without additional postings of these atrocities on this forum. Can I ignore them....yes....but sometimes I read them thinking they are leading to the site subject (PMR/GCA)....I enjoy reading things about families, gardens and other human interest subjects as they are light and makes me feel connected to the writer. But political opinions and views stress me and I feel have no place in this forum.....just my opinion
Me too Luigism, makes me feel that I’ve actualy met some of the frequent ‘posters’ on here. I love hearing about their everyday life. I don’t read the daily papers much any more because it makes me feel upset with all the gloom and doom. This site is a breath of fresh air.
I agree...i want relevant things ...i am on here after trying other pmr places... this was the only one without the hype or snake oil rubbish...facts and proper advice...
No - the people who monitor this forum are all volunteers - and I think at present Kate is on her own with such powers - and it would need full time employed moderators to do that.
There are two other PMR forums without snake oil and hype. One is the original PMRGCA forum at patient.info and it is very strictly moderated. Snake oil usually gets removed before I see it! Anything potentially problematic will be removed first and questions asked after - if the decision is it is OK after all, it will be posted. But patient.info is a large, NHS associated service and they have paid staff. The other is the one associated with the NE of England support group, it was the second forum set up, but it had serious platform problems a few years ago which cut contacts drastically and now really is very quiet with mainly "old friends" using it.
There are articles in the newspaper we skim over, in magazines too. We have the choice of what we can take in. This forum is so informative , and compassionate. I think our “PMR” can also affect how we interpret things. (ask my husband ❤️).
Hi like some others on this site, really only read the comments that I am interested in and skip the ones that have nothing to do with PMR/GCA... so it really hasn’t bothered me. I was so thrilled to find this site, which I found in a book about PMR/GCA. I am British and live in the USA and haven’t found anything like this over here. It has been a tremendous help to me. Thank you all for posting your experiences with PMR/GCA.
We did try to get a USA/Canada site going - but to do such a thing requires a critical number to make it work and get mentions on the internet to make it grow. One of the UK forums that had horrendous platform problems is now very small and cosy - an old friends chatroom more than a functional PMRGCA site. But still enjoyable.
The moderator is doing an excellent job! Everyone has an opinion and everyone has a life. I find that right now I am awakening with Trump and children on my mind--nasty and why couldn't I awaken to George Clooney or someone like that. I do not resent folks writing of anything they believe stresses their PMR- I have all these nifty buttons on my keyboard that allow me to skip forward and back and not read what doesn't play a part in my life. I am Canadian and find this my go to site on this disease.
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