I joined PMRGCAuk 6 years ago. Most of what I know about PMR has been gleaned from this site. I am Canadian, and I have enjoyed reading the various posts and your camaraderie. By my choice I am not on any other social media sites : Facebook, Instagram and the like. I am functionally illiterate computer -wise, to my kids amusement! It seems to have landed me in hot water today.
My last post was at least 4 months ago. Earlier today I posted a question about the potential relationship between doses of prednisone and how they may impact outcomes should one contract Covid19. It was an honest sincere question of a scientific nature, the purpose to perhaps aid our members moving forward in these uncharted waters. I truly thought I was within parameters of the site because I was asking about Pred doses and not chit chatting about social distancing or self isolating. I also have no idea how to move the post to the covid site.. yes I am that stupid..
I also thought this was a ‘safe site’ where one could ask such questions. Clearly I was wrong and it is not.
In short order Moderators jumped in and I was moderated. Thou shalt not mis- post nor defend oneself..
Further to that I have been taken to task privately, accused of ‘ deliberate trolling ‘... what the heck is that anyway? Certainly sounds seedy. I was told that my reply to a Moderator was aggressive, that my post had been reported to an Administrator ( is that like being sent to the Principal?) and that if I did not change my attitude my activity on this site would be restricted.
Heavy sigh.. A mea culpa yielded no sympathy.
The final straw, I am afraid was being told that this is a UK based website and that the only complaints, except one, come from non UK members.
Well, I will not stay where I am not welcome.
I will spend my time in self isolation on quilting websites. Donna Jordan of Jordan Fabrics and Jenny Doan of Missouri Star Quilt Company are warm welcoming kind people who are always cheerful and encouraging.
My final parting advice is this : Go home. Stay home. Do not visit your children or your grandchildren or your neighbours. Don’t let them visit you. Have someone drop off your groceries. It will be tough . Phone or FaceTime or Skype your friends and family.
Do this for 12 weeks or until ‘they’ give the ALL CLEAR.... and you will LIVE. This virus will spare no one..(. also, wash your hands for 20 seconds and don’t touch your face.)
It was fun while it lasted,
Stay Safe and God Bless,
Dorothy ( not from the UK)
Written by
rockyandzeus
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So sorry that all this has upset you Dorothy. Most of us have been "ticked off" by moderators because of false posting (as well as other things)😊 but understand the volunteer moderators have literally 100s of posts to deal with every day and they themselves are 'kept in line' by the HU community.
I agree with them in saying our two particular threads have been taking different paths and it was difficult for them to keep up - now one or two usually take turns to regulate the threads.
I have 'sinned' several times and have posted on the wrong thread. Luckily I was able to take it in my stride and just shrugged it off. It would be easier if the virus posts were put up first every morning but even our moderators have to sleep sometimes.
Kindest regards and good luck and good health for the future.
I am sorry you feel slighted, it is understandable, but if you could see it from the moderators side you may understand more why it happened.
This is as you say a forum to support people with PMR and it is modetated by people with PMR/GCA. They are not paid or proffessional, they are doing it purely to help others in their position.
Lately corona virus has totally occupied everyones mind and try as they might to stop these conversations they have continued. So they started a corvid string to contain all these and allow the PMR/GCA support to continue.
For a forum to function well, rules have to be followed. Unfortunately many people here did not think this applied to them. Some did not bother to read what had come before, others just ignored them., and the corona posts continued.
I have woken in the middle of the night to find at least two of them working here so that it's main function can continue. They can not be expected to continue at this rate. Either they need more support or people need to read and follow rules.
If you and any others value this forum and the support it gives please follow the rules laid down. They are not there just to annoy you.
I feel that in these extraordinarily difficult times we are all stressed and should all be showing sympathy, kindness and understanding to each other. I appreciate that the moderators have an increased work load but to be honest isn’t the whole world, every thought and every fear about this virus? Is posting in the wrong place such a crime? I’m a reasonably intelligent individual but even I would be confused regarding where to post a thread and what qualifies. Let’s hope it’s not putting people off posting at all. For the record I enjoyed your post and had had the same thoughts. I’m staying home from my clinical job in the NHS because of my long term use of steroids but am on a low-ish dose and wonder if I really am at more risk but cannot take that risk. Anyway take care, stay safe and enjoy your quilting. I have rediscovered knitting which is great for anxiety!
I see the problem arises from HU. They like us want the forum to continue in it's orrigional form. They don't want corvid posts and expect the mods to just deal with it. Not just in the UK, but world wide. They are not qualified for that. There should be a corvid site people can go to for advice, then the PMR linked corvid questions could be answered without extra stress.
At the moment they are trying to be all things to all people and we all know that won't work.
We all know how valuable the forum has been to people who's doctors know little, this needs to continue.
Its a fairly simple request. Admin have said they want all covid enquiries on a separate thread. Each day we give you a new thread dated and very clearly marked Covid. Thats where covid queries go. ONE covid thread for ALL covid queries. As members you dont need to read EVERY post and reply which moderators have to. We are reading hundreds of posts and replies every day. We are all suffering from the same as other members and we do this voluntarily to jeep the forum available for everyone. Surely posting queries to a given thread is not beyond any member on this forum. YBB
I'm just a interested onlooker and have never had a personal argument with a Moderator. However I have to say that I think the response to rockyandzeus's first post was rather harsh and peremptory. She made a valid point that her question was directly related to PMR and, more importantly she raised a question that is of interest to us all. Personally I haven't found 'all the info [I] need on the covid threads'. I think too that she had a valid point that certain other 'stand alone' posts should have been gathered under the COVID head. I'm feeling a little nervous about pressing the 'Reply' button which should not be the case for any contributor to this forum.
Please understand these mods are unpaid and unwell themselves, struggling with their daily issues before we even get to COVID. There was a deluge of COVID posts, the majority asking the same questions, over and over and over every day and some expecting bespoke replies for their particular case . We can’t expect them to reply to every one and in fact they must not give medical advice which many of them were asking for because their home doc advice was not accessible . They have also had abuse if the reply was not to the poster’s satisfaction. I also wonder how many have put in even a penny to the charity PMR/GCAUK. This has always been an internationally used site which is absolutely fantastic but volunteers do not have local policy or data at their fingertips or easily gained up to the minute data. They have to go out an find it on the internet like everyone else and to think it is any easier for them or anyone else is unfair; it isn’t a supported public service. Yes they are used to it but surely a bit of a try to click on things on the website to find old posts is worth it to save others who are must as afraid, overloaded and ill as everyone else.
Well, I pay a regular standing order to the charity, though I don't think this gives me any extra right to comment. There well may be posts of the sort you mention and, as you say, they are not reasonable. However I don't believe that rockyandzeus's original post came into that category. She was raising a question of interest to all PMR sufferers and worth some discussion.
Yes I agree with you -Marijo1952 and I do not think the moderators MUST or should necessarily reply in a 'bespoke' way to every COVID related or 'other' more general question - that hasn't always happened in the past either - or since I've been around here although sometimes queries have been directed at individual members. I think there is an expectation that forum members should support each other & offer their experiences - which are not necessarily 'advice' but just 'experiences'. Under such trying circumstances I think most people on this forum 'get' they will not necessarily receive direct responses or immediate ones ....
The separate thread for covid was at the request of admin not the moderators. We dont have that authority. We then have to follow the guidelines. Which we have continually done since the decision was made to allow covid queries on a pmr/gca forum.
The post that i turned the replies off was asking about how covid would affect various things with the members pmr. That made it a covid post. If the member was unable to move her post to the covid thread she only needed to ask one of us and we could have advised how to do it. Answers to some of her questions were already available on the covid threads.
I personally havent posted about covid myself on the open forum because i dont know any more about it than most people but those that have posted covid related articles on the main forum are very experienced members and the articles were all from respected organisations that have written sensible and correct reports on the covid subject. They were posted off the covid thread because they were considered important enough to warrant a separate post. The fact that this would happen was announced right back at the beginning when the new covid thread was introduced.
We have not picked on any individual nor been unfair in stopping replies to posts that were in the wrong place. YBB
So sorry you have been treated this way - as a member of this forum I apologise on behalf of all the others here who think treatment of some members lately has obviously been inappropriate and heavy-handed - especially at such a complex and difficult time. Thanks for your final words of encouragement and advice' and all good 'luck' to you as well !
I am dismayed and sad by the way some people are re-acting to being asked to post on a specific thread if it is Covid related'.
None of us ever expected a Pandemic to come into our lives and we would have to make adjustments to our 'normal' lives.
Yes, if this was not a free to air website - then it would have paid administrators, paid moderators and other paid employees.
The hard fact is that PMR GCA UK is run by all but 3 paid employees the whole of the Trustees are volunteers, every Support Group is run by volunteers. Most those people, have either had or have PMR & GCA and that includes some of the Trustees and all of the Volunteers.
I have been one of those volunteers since the 14 March 2008.
Many people use this site and never think about joining or giving the odd donation.
None of us have ever asked anyone for a donation, except me, who asked people to support people who were doing marathons, climbing mountains, doing long walks etc
All the information on this site is, what I call 'hard information' and all free of charge. No advertising, no tracking and no keeping of personal information.
Is there anywhere, except for Patient.info, which has employees - posts just disappear replaced with the words 'this post has gone to adminstration'.
I don't know what happens to those posts, as I have never posted a a post where it has gone to administrators.
We all come to this site because we had been unfortunate to encounter either PMR, GCA or both and we looking for information and help.
GCA is the largest member of the Vasculitis family and many people, mainly women either lost total or partial sight because of the low profile.
There were two sites, Patient.info (started by two Tyneside GPs) and one run by Arthritis Canada and that one closed down.
Those of us in 2008 were really struggling with these two auto-immune illnesses...............only Patient.Info had a small amount of information and that was split into two threads PMR & GCA. It took time to get them under one thread. Luckily 5 fiesty women met on that site and PMR GCA UK came into being.
There was very little research and only one support group, located in Southend near the hospital where Professor Bhaskhar Dasgupta worked and had a dream and which was a dedicated charity to PMR and GCA. He was doing sterling work on both PMR&GCA treating patients and doing research. He had managed to get Arthritis UK to produce the only leaflet on these illnesses. Luckily 5 fiesty women met on Patient info (4 with PMR & 1 with GCA).
14 March 2008 was the first meeting to start up the charity, 25 people attended and all paid their own way.
14 years later, profile raised, more awareness, much more research and most important actual support groups . Virtual support groups and 95% still done by volunteers. The researchers are paid but they work ungodly hours.
'Actual' support groups where you meet people face to face and you read each others faces and get to know each other are much easier than 'Virtual' support groups which is what this is. When people leave a support group - they just leave.
It hurts when people write stuff they would never say face to face..........that is the big downside of the internet. The people who made the internet possible, never ever envisaged the future use.
If you want to leave please shut the door quietly.
I would very much like to publish the conversation I had with you last night in full but that would be breaking confidences. Private conversations are just that - but you have quoted me out of context and, I think, unjustly. To take just one point:
"Further to that I have been taken to task privately, accused of ‘ deliberate trolling ‘... what the heck is that anyway? Certainly sounds seedy. I was told that my reply to a Moderator was aggressive, that my post had been reported to an Administrator ( is that like being sent to the Principal?) and that if I did not change my attitude my activity on this site would be restricted.
Heavy sigh.. A mea culpa yielded no sympathy."
I did NOT accuse you of deliberate trolling - there were a couple of cases last week, they did not reach public view because they were dealt with by the moderators and Admin immediately. But they did cause a lot of work and upset. I also provided an explanation of what it means. If you wish to wear that hat, that is your decision, but I did not say it in that context at all. You were told that a reply and separate post was aggressive in tone and reported for good reason - and I was under the impression that last night that had been discussed. I am extremely hurt and upset by your allegations. And I thought I did express sympathy. In the middle of the night for me.
You asked a Covid-related question - one that no-one here could have answered because as yet no-one in the world has the information to answer it. There are no epidemiological figures relating specific existing conditions to severity of the disease or death rate. There isn't time to do that yet. Neither the UK nor the USA has been doing enough testing of assymptomatic subjects to provide such figures.
Anecdotally it was said on the Lupus forum that it has been said by a doctor at the front line that they are seeing fewer cases with existing autoimmune disorders than they had expected. That is likely to be linked to the fact that we have been told to be scrupulous about hygiene and self-isolation and many of us did it long before our governments spoke up. But there are no figures for individual disorders. There may never be.
I have had some pretty rude responses to replies I spent a lot of time checking out, I provided one answer that I knew from "history" but got a rude "I will only believe proper links" or words to that effect. I then, as I usually do in view of a question, spent time finding the FDA research - something the person could just as well have found themself - it was likely to be of interest to the others who also replied so I didn't mind. But the original questioner didn't appear to acknowledge it. I have also weeded out posts about the urban myths that are circulating on the internet relating to Covid 19. They are dangerous - they won't protect you from CV, but if you think they will then you are likely to neglect the things that will: isolating and hand washing.
I have answered hundreds of such questions over the years, but recently the deluge of the same question over and over again required some way of collating it. We and Admin PMRGCAuk came to conclusion one way of doing that would be to have a daily dedicated thread. It worked quite well at first - but in the last few days it has been different. But it did make it clear that some people arrive at the forum, don't look at recent posts and ask a question that was asked just a couple of hours earlier. And some don't even read the "Thread of the Day" before asking their question. Others criticise the answers given in good faith. And that is where the "this is a UK forum" came in: the answers are often relating to the situation in the UK, which is at least fairly uniform. We can't provide information relating to the USA, Canada or Australia - even the US authorities can't get their ducks in a row!
The Thread of the day was getting over 200 responses PER DAY - that is why each was stopped at some point after 24 hours as were other threads once a question that had been asked had been answered. But the Mods got a thread of private messages because the stopping of a thread happened to coincide with someone entering their comment and they took . I spent hours on that alone. Contrary to belief, I do like to have a life. I haven't had time to watch TV since Covid 19 took off - except to have Sky News on while I answer questions. I listen to the daily briefings from the experts - not the politicans, but the CSA, the CMO and, above all, some scientists including Simon Clarke from the Uni of Reading, and Cuomo who provides me with a lot of info - but it doesn't apply to the US as a whole. I have access to the same as anyone else - but I do access it and try to use it here.
You can believe me or not, just as you please. But we do the job because we believed we can help. If it isn't good enough for you - then perhaps you need to look elsewhere.
If you want to talk, please feel free to email me...
I have removed the email adress as it is HU policy not to put personal emails on the public forum. Please use the pm facility to exchange such information - or it is possible to create a special less identifiable email contact if you really need to make it public.
PMRpro
Do it 10plus times a day times with 200 other things to read...all voluntary. No pay. Bad for health but we want to help...but members must take responsibility too. If you join you follow guidelines...it's like me. I am told I must endure social isolation as a shielded person. It's no good me going out and shouting at my neighbour for being in the shared yard so I can't get fresh air. I could shout at the gov but where? I have rung supermarkets frustrated I can't get an order slot despite the idea that shielded come as a priority, nothing. Did I shout at the poor bloke on the phone at Tesco...no I wanted to but I could hear he wanted to shout at me, mixed with sympathy. So I apologised for bothering him and told him to stay safe in the call centre. It's called being human and people are funny that once they get a view of someone it's fixed, they don't ask who that person is, what they do in the world to help others and what they are enduring too. Motivation is always important. Dont be scared to press reply...the written word without body language etc is always harder than words shared in f2f contact. It's always worth remembering that.
And not guilty...no moderation done.
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Energy back finally 
Further to difficulty tapering post
Finally, a human Rheumatologist!
Snoring is this the final insult!
