I fail to see how 2 part-time staff can manage the site as well as the Moderators have been doing for the past years.
A site that has been a safe place, with no crackpot posts and very little trouble is now open to abuse. When there has been trouble, it has been stopped in its tracks. Who now is going to look at posts everyday and early and late?
People post from all over the world and all time zones.
Does this mean that it is going to be more like Social Media, with crackpot posts and fake news (as the current phrase of those who should know better).
More 'chaff' and less 'wheat. No designated 'Off Piste' days - which gives posters the freedom to chat, without PMR & GCA posts being drowned. Less hard information etc.
When I was first diagnosed (14 years ago) and was looking for help. After much searching I was about to give up I found Patient Experience (as it was then) a well policed and trustworthy site. 4 other people found me the rest is history.
It is now Patient info. The site was started by 2 Tyneside Doctors and is a trusted site, used by many Health Charities, GPs and the NHS. Any post made, which is in any way dubious, is immediately taken down and a note saying 'this post is being moderated' - to this day it still is a trusted site.
That is the only other site I would recommend to any person, but it has one failing, little chit chat, even occasionally.
If this one goes the way I think it will. My limited time is over here and I will head back to Patient info.
Founder (1 of 24) retired.
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jinasc
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This post has rocked me a bit....#1 jinasc!! I hate to see you go anywhere else ...and not be here. What the heck did I miss or was this just a flat announcement with no prior discussion? Where can I go to get information? The announcement post does not allow for replies/questions.
The only thing I can suggest is that you send an email to Candy at
candy@pmrgca.org.uk
It rocked me as well. I only got to know once I read it today and could not quite believe my eyes.
We have had enough trouble in the past and the people who were Mods all volunteers and all knowledgable and aware.
I don't think the people who made the decision have either PMR and/or GCA and know how little newly diagnosed people know and are seeking honest and true support. I don't think they are aware how many medics don't know either.
I can support that last statement as patients over the years have taken and discussed with their medics the Tapering Plans and the medic mostly have grabbed it with both of their hands. Patients when they have hard knowledge can pass it on politely. I can support that last statement once we met Ragnar and devised a couple of plans, one of which has undergone a small research trial and how my own Consultants immediately saw the sense. There was no 10% rule until we came into being. It is called Patient Power.
Thanks for replying....I will hopefully get some information. It is difficult for me to understand why something like that would be posted...no replies allowed and really no explanation that someone like me gets.
I'm just someone who had come to rely on this forum and all the people in it, all, who have literally saved me from a depression and I went through steroid overload, partial blindness, emotional issues, tapering....kept me on my feet and enabled me to get through this...showed me I would get through GCA.
I'm not sure what all the references to 'guidelines' is...can't ask...I know I did things as a newbie that I was corrected on and that was fine, I learned...I just don't understand
I think it rocks me so because I have come to rely on the Forum as I knew it...so much.
I did read them from the post...and we all need guides....but we need what some of you moderators offered more in my opinion. You gals offered an understanding and support that can only come from shared experiences. xo
I absolutely have to include you in praise....you are the Viking GCA Queen....and give many of us with GCA hope even those of us, like yourself, with sight loss. xo
Show me someone who I think I am two years older and uses computers and does make mistakes, but they are small and don't really affect anyone............this, to me is one big error.
In my 4 years here, I have come to the conclusion that the forum is simply built with a disproportionate number of good people. That will not change Grammy and you are a big part of it. We become pretty good at embracing change. All will be well, you’ll see. 🧡 Our caravan keeps rolling, regardless.
I don't feel that would be appropriate joyce69. I'm sure if you write her, she will respond. As the Administrator, I'll be surprised if she does not respond to me or anyone else who cares enough to inquire.
If Admin think that referring to the Guidelines is the answer, I’m afraid they may be greatly disappointed. As had been seen during the recent Covid-19, there are always some who don’t think they need to adhere to guidelines.
Those of us who have been on here for a long time know full well there are contributors that try to peddle erroneous treatments for PMR or/and GCA. If they are read by a new patient it could prove very detrimental to their health.
There are also some who seem to have their own agendas - and chose when to post knowing it has considerable airtime before deleted.
Disappointing to say the least. There was no explanation, other than the implication that the Moderators had too much to do.
After five plus years on the forum, I do pick and choose what posts I want to read, but, if we have no policing, it seems I will spend even more time on the delete button!
For me, and for lots of others the forum has been a lifeline. I'll say no more!!!
"their solution" - great! Really quite funny.😉🤨 The moderators have too much to do so get rid of them?? Not "is there anyone out there who is willing/qualified to moderate"??
Thanks for this jinasc. I share your concerns and those of others responding. Because replies were turned off to the post I sent my concerns to Candy in a private chat. I didn't think a post on the topic would be published.
If things go off the rails as they have in the past I'll be out of here too.
I will be terribly upset if that happens, not for myself, but for all the new followers and those yet to come who will not have the benefit of your knowledge and experience, as well as that of PMRpro and others who we may also be in danger of loosing.
Yulik, while I appreciate what you're saying I must disagree.
I've followed been a member and follower of this forum for more years than I like to admit. Not so long ago, I believe before your time here, the moderators and members such as myself had a horrific time when it all went off the rails and became "social forum" rather than a forum designed for a specific purpose.... to provide guidance and support to those of us with PMR and/or GCA.
It took a lot of hard work by the moderators to get things back on track. I pulled back from the forum for some time and was so very pleased when it returned to being what it was meant to be.
This is a medical forum (not social media) and needs moderators who recognise the medical issues raised.
Although the Admins who will be running the day to day forum are employed by PMRGCAuk and may be very knowledgeable and competent in their own way they are not patients.
Their knowledge is therefore secondhand and theoretical only - and I’m not sure if erroneous advice is given, they would immediately recognise it. That could put patients at risk - I sincerely hope not.
I been on this forum for 8 years and I want to see it continue, I have no issue with change and I really do hope they can manage the forum successfully - as I’m sure do all of us.
This forum is meant to be about pmr and gca not pictures of gardens and trivial posts that drown out important ones. It's taken ages to get it back and I know for sure there will be people who think they are above all rules and guidelines and start posting garbage. You are very naive to believe otherwise. YBB
If I remember correctly, did you not post about a year ago with a suggestion for Admin? Did you get a response?
Once a post, not on here, said the New Zealand Health Authority had a cure for PMR and it went on to say what it was, which I am not going to repeat on here.
I contacted the NZ Health Authority and asked the question, told them which site it was posted on and it was taken down within a day. Yes over the years, Snake Oil salespeople have posted about that this, that and t'other is cure and they want you to buy it.
When most of know that until cause is found there is currently no cure. Both PMR and GCA were much neglected, except for a few dedicated medics and on in particular who had a dream of setting up a charity and it happened.
Who is going to change it if the new system is abused by Trolls and Bad Advice? A wait of even 1 day and bad info is out.
I can only hope I am wrong and social media has changed............
The problem with expecting people to report posts comes when people are friends of the poster and feel its appropriate to go off whenever they feel like it. This isnt fb or mewe its pmrgcauk and has to remain like that otherwise people needing help get missed. If people want to chat about things other than pmr and gca there are sites set up for people to go to such as mewe where a number of this forum are also members. YBB
If the replies to the post had not been shut off, giving people an opportunity to express their feelings, I probably wouldn't have turned to the open postings. Who would I private message when an edict has simply been announced?
My first question was....what happened....who do I turn to? Now I know. We shall see.
I too messaged Candy and complained that replies were turned off and it would be valuable to know what members thought. She replied very much in the tone of her post, but did not give an answer.
I too made the point that decisions should be made by people who know what they are talking about and not just administrators. I was told that this was how forums were run. I pointed out that if any one took bad advice involving drugs, it would be their fault.
I had previously complained that I did not feel that the mods were getting enough support from admin during the initial covid panic. I was told then that there were only two of them and that they were both part time so couldn't be there all the time. So how now will standards be maintained without the help of the mods?
We all have a great deal to be grateful to you for Jinasc, I am so sorry that you have come to this decision.
I have also mentioned to admin that anyone taking dangerous advice would be their responsibility but have not had any response as to how this will be managed by them. I suspect because they dont have a way of doing this part time. YBB
I totally agree with you Jinasc , this is a choice taken for the ease of the workload of Administrators , not for the good of this Forums Users or its Membership.
Part Time Administrators with other Work Day Functions and a UK based 9 to 5 working week cannot successfully moderate and protect a busy , active Forum on a Day to Day basis , no matter what may be thought or organised as a plan to try to do it.
My opinion has nothing to do with whether I have a happy relationship with our Moderators or Not.
I valued Moderators and their Work , not just because I value , PMR Pro , Yellow Bluebell and Poops as people , but because the role of a Moderator was important , in fact it was indispensable, in keeping us all safe from the Stress of inappropriate posting and messages.
People may have noticed my absence from the Forum of late ( some may have been breathing a sigh of relief !)
The reason for my absence was the effect that certain behaviour and inappropriate , inaccurate and anxiety creating posts and replies had on my Health during a time of Anxiety like that we have all felt in the Covid Crisis.
Most importantly, it was the lack of support , or help, I received personally , and the lack of assistance I could see was being received by the Moderators and other Members while trying to deal with Site issues when trying to get support from the Main Administrative System .
I am not saying this because I am privy to any more information than other members , or impartial ( you all know how I try to see all sides and be very sensible and positive in any debate we have ) . I can say this because anybody can see it on previous posts . The lack of replies or input that you can see from Admin to settle a matter is evident , and personally, I didn't receive messages in reply on PM in my case that was detrimental to my symptoms and forced me to step back.
This Admin led system will now be the only system of Protection and Support available to Us in onsite disagreements and policing of Negative Posts or Comments and as I have experienced it I do feel some concern.
My symptoms had finally started to abate and I was considering a return after taking my advice and getting back on track. Now, I fear , I will not feel comfortable contributing even though I know I have had a lot of kind messages from members checking how I am and giving me encouragement to do just that.
I would like to say sorry to anyone I haven't answered yet , I will be contacting you personally very soon. I miss being able to help and chat with you all but after only just recovering from a bout of Dysautonomia made worse by one Admin blow , I have to take the advice I give to everyone else and protect myself from the effects of another one.
On this current point , however, I would seriously like to request the Administration to have second thoughts on this action , but if they will not do so, I would like a full explanation in a public post for Us all about how they are planning to take over this role. Whom will be policing the posts outside office hours and at the weekends? How will your policy have changed to improve our protection ?
I would also like to request that Admin do not turn off replies on this post , as this debate needs to run , you need to hear the opinions of your members , For or Against . We deserve to be respected and given the right to reply on this issue.
I hope the Charity will listen and that everybody takes the opportunity to give their opinion and give their support and thanks to Pro , Yellow Lubell and Poops below in replies for all the work they have done on our behalf, and will probably still try to do , because they will not want to leave you feeling unsupported.
Thank you everybody in Volunteer Moderation , believe me , the irony that your Volunteer Work has been sidelined in a week when Volunteer work should be being valued and honoured hasn't escaped a lot of Us!
Everyone has missed all your help and sensible advice over the last few months especually the moderators and ambassadors but the last thing this forum should do is make you more ill which it was doing to you and no doubt will continue to do so to some members. Take carexxxYBB
Please look after yourself and try not to read anything on here.......we will let you know what the outcome is. You are important to quite a lot of people, many whom have been helped over the years by you.
I dread to think of the number that bee and other members have helped. We have been lucky to have a good few people willing to share their tips and advice to help everyone.xxYBB
Thank you all so much , that's so kind of you all , and I hope you and the members look after yourselves too , any of Us , even the most Hardy or Chipper, can get affected Health-wise by this sort of thing .
My greatest concern has always been for those less able to cope with seeing what is inappropriate because of Anxiety and other Mental Health reasons. If I get affected by it with all my Mindfulness Strategies ( and Silver Lining thinking ) I know it will be having a grave effect on those who find Conflict or Insensitive Comments far more of a trigger than Me.
You can stop reading a thing , but you can't unread what you started reading , the damage is already done and so swift action and removal of bad material like that we got from the Moderators is vital to our members General Health.
Dear, dear Bleary....You have been so missed but your absence has evaporated!! with that eloquent posting. Hearing your words and what you have been through makes me a bit more indignant about the way this was handled.
The Pro, The Pooper, The Lulu Bell...all sensitive givers as well as yourself.
Please take care of you....take the advice you would give one of us💖💖💖xo
Thank you for your kind words , that was exactly what I did , hence my absence .
I know the people that contribute regularly with advice really want to keep doing it , keep supporting others and hopefully make everyone's path a bit easier.
But , it becomes hard to do , and quite Stressful even for the Strongest Members , when you can see negative activity going on around you and things don't seem to be resolved or things aren't removed when complaints ( not just for your own sake but from the standpoint of wanting to protect other members) are reported to Admin.
People like Jinasc don't bring our concerns into a public arena about anything unless it is of genuine concern.
I just hope you are well yourself and also don't worry about this , it will be resolved and hopefully in a positive way for All.
Codswallop as usual. We were instructed on what was allowed and what wasnt and lets face it you have been told numerous times yourself by admin but still argued that you should be able to post what you wanted no matter how irrelevant or how offensive your language was. We were following admin rules and guidelines which if everyone did there would be no need for moderators but on this forum quite a few people considered they were above the rules and as you and adrian opened up mewe for people who wanted to just chat about their gardens etc I would have thought you would welcome the fact that this forum would be available for pmr and gca advice. YBB
Dear jinasc, nobody wants it to go the way that you fear. Hopefully our ambassadors, volunteers and longstanding members will still be here to help new members (any members in fact) with questions. And anyone can raise a report on a post that they are concerned about and we will deal with it.
Yes but what happens at night and weekends when you already know we get inundated with garbage and dangerous posts. This move is endangering our forum members and admin do not seem to care. Even tonight there has been the usual rubbish we warned you about inciting people to cause trouble and just because you have looked tonight st the forum we know fine well it wont happen nearly 24/7 whichwe were doing. All we expected was your support in ridding this forum of certain members who were basically trying to call the shots and this was your response. So when a member follows a dangerous recommendation you and candy as the replacement moderators will.be totally responsible. YBB
I wish I could double and triple like. I support you so much and know it's after midnight in the UK so not everyone is on site right now. I'm sure this will continue tomorrow. Please take care.
We really appreciate everyone who has supported us. I am sure this will rumble on and hopefully admin will see what our members actually want and need from their forumxxYBB
YBB, if you’re seeing this- it’s late. Please sleep if you’d rather and feel free to answer tomorrow.
As you know, but I’ll state again for the benefit of others reading and in the spirit of full transparency yet again in case anyone ever missed it, I do not have PMR, but I have polyarthropathy and Vasculitis from Antiphospholipid Syndrome attacking the vessel lining of all vessels, from the tiniest of capillaries on up to arteries, and all vessel sizes in between. I can clot in any sized vessel in the body- tiny capillaries to large arteries and anything in between including organs. I’m on very high intensity anticoagulation and Rituximab.
I clot in the brain. I have seizures. I’m on anticonvulsants twice daily. I’m also loosing my vision due to clots to the optic nerves. ( ischemic optic neuritis) . I clot to the bowels. I’ve had several bowel surgeries. I have dysautonomia- clotting to capillaries that innervate that system. ( Hello Aunt Bea!)
My memory is failing . I have Vasculitis in my brain... from the Antiphospholipid syndrome. And I’m relatively young. I’m 51.
I have PMR like syndrome due to polyarthropathy.
I came to this forum as a medical refugee seeking help and knowledge about steroids.
I needed massive wisdom quickly. Pred with Vasculitis in bowels?
( I was switched to Solumedrol injections 125mg every 3 weeks)
Steroids while on warfarin? ( my target INR is between 5.0-5.5 which is crazy nuts. This is why I’m on Rituximab- hoping to get the antibodies down so my blood will not be so sticky.)
Pred while on heparin? Bone density?
( but I keep clotting through these anticoagulation therapies... now it looks like maybe switch to Fondaparinux may be tried. Safer to add clopidogrel...)
These are very unusual questions. I’ve not really put them forth too much here as they are so niche and specific to APS, my clotting disorders. I just read and learn...
This forum has been a shelter for me. A place where I can come and I know I’m in good hands.
Not all HU forums are like this. Ask PMR Pro. She knows exactly what I mean! Very scant admin at best- when it’s there it is very good... otherwise you may as well be on face book talking about God only knows what so quite a lot of time spent trawling through off topic arts and crafts projects , etc.. to find useful publications to the health issues or questions posted.
It’s wonderful to hear from a diverse group of you. It paints the broader picture.
APS is very rare. It’s hard to get the help I need. For me, this is very life threatening. I appreciate that when I come here I can be assured that the information given is vetted and researched, and the women that so graciously giving of their time obviously do so because they have a commitment to serving others.
I am still awake and know from previous chats you are dealing with s huge amount of health stuff even if its not pmr and gca. If the advice on here helps you then that's great. Even though i said earlier the forum was about pmr and gca I didnt mean to not include people like you that get help here without the above illnesses.
Yes pro has been on forums where there was no organisation and it's hard when it's like that because the important stuff gets lost. We understand people want to chat which is why the off piste days were started so we didn't drown in photos and could still see the posts requesting help. We hoped that would make everyone happy and the days were always popular.
Hopefully things will stay the same and you can continue to get support from all the members who do such a great job of helping everyone even if not directly with pmr and gca.
No one is going anywhere and all your queries will still get the same reliable answers they always did. Take care xx🥰 YBB
My problem is ...that you are chewing water, causing this thread to get out of hand, and really is very upsetting.
I already suggested on one of my earlier posts yesterday, that leave it as Admin wants, and see how it goes. It can always be changed back to how it was.
Then direct your post to the whole forum not me. As you can see if you choose to read you are in the minority and every other reply is about members not wanting this change. (Sorry, bar one other post now deleted). As you felt it appropriate to have your say so can every other member whether you like their opinions or not and we can as members reply to their posts. If you dont like the topic or opinions please feel free not to read. YBB
Yellowbluebell unfortunately it’s you who are making most of the fuss here.
Actually, in my opinion compromise is the best thing.
Whether I’m in the minority or not is not the issue...
Change is sometimes a very difficult thing to handle, especially when one is an established poster...but as I reiterate, let’s see how things progress, whether for the better or worse.
Hello Fran, Maybe you can help me understand. Why would such a dismissal of wonderful volunteers be done and a post ever be put up like Candy's not giving us members an opportunity to respond? In character, it is so different than the tone of the forum that has become so important ...to me and many.
Carol, I know how important it is...I share your feelings. We will just have to see what happens. The gals who have experienced these diseases and come through the are invaluable. xo
Carol we are all still here at the moment and dont intend to leave anyone without help. The titles and abilities of us as moderators wont affect us all helping who ever ask for it.xx YBB
I wasnt rude. I stated that she shouldnt reccomend everyone who had not received a sheilding letter register for free boxes and help if they didnt need it. Surely even the most stupid of persons could see that overwhelming a service wasnt a good idea. Exactly what I suggested would happen did happen , that people who desperately needed that helpfidnt get it for weeks because so many people tried to get priority shopping slots and free food even though they didnt qualify. As you have only just appeared as a member you are either very new or one of our old members who didnt agree with the forum changes under a avatar to enable you to throw insults and accusations. YBB
YBB, l am not a former member under an avatar to throw insults and accusations, l’ll leave that to you as it appears to be your speciality.
I am Mrs Nails Husband, you bullied her out of this forum because she was kind & not aggressive or rude.
My wife needed that Shielding information not for a free food parcel or a supermarket slot, as we already had a prepaid Weekly Delivery Pass but she needed the advice from the letter regarding what to do if she developed Covid symptoms plus as you well know she has kidney & liver issues and a new diagnosis’s of angina.
As it eventually became apparent there was some confusion over Patients not being referred because their condition did not trigger the parameters set, there was no way of identifying that their Medication could cause them to be immunocompromised and needed to be Shielded.
Angela did not delete her post that was done after her being informed in advance that it would be removed and following that she left the forum.
I joined to check if there was any relevant information that Angela could benefit from & l think you should be throughly ashamed that you could cause a long standing member to leave at such a critical time.
I didn't anything wrong and angeka took offence at z general reply. I never suggested that SHE shouldnt register but that she shouldnt reccomend EVERYONE registered. If you maybe read the whole post and reply you will realise what I actually wrote and this would stop you fabricating nonsense.
I am well aware of angelas problems and would never suggest she didnt get whatever things were available to her but to reccomend people who didnt need to register tried to get these things was negligent on her part and as an ambassador she should have known better.
I dont and wont feel ashamed for something you and your wife have made up and the proof being if she was innocent why was she told her post would be taken down. You both need to get a grrip on reality and realise that a general comment about not overloading an already dodgy system was just that and more than a reasonable response to her statement.
Until then I had always respected her but her actions after my response disillusioned me. So maybe go back and check the truth before spouting garbage at me. YBB
It was understandable that Mrs Nails left, but she is a tremendous loss to this site. She has helped hundreds of people even whilst suffering greatly most of the time. My thanks and respect go out to her.💐🍀🍀
I understand everyone's concerns. No-one, least of all the charity, wants to see the forum descend into a wild west of posts and replies.
Our ambassadors, volunteers and all our helpful members who share and assist others will hopefully continue to do all the wonderful things they have been doing. They are all brilliant at it and it's what makes forums like this so beneficial.
Anyone can still report a post they have concerns about.
The only thing that has changed is that we, the admins (who are staff and trustees) will do the behind-the-scenes work of talking to members who may have breached the rules and who we think need either guidance or, in certain cases, action.
Most moderation takes place behind closed doors. Occasionally a post may be edited and on other occasions a post will be public, like this is.
I am closing down replies to this thread now- it has in places become less respectful to others than we would hope to see on this forum.
I would ask everyone for a little patience to see how the changes go. You may have concerns or feel the need to criticise, but I would respectfully ask you to do this in a private message to either Candy or myself.
Thank you.
Fran
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