I spend time on here looking at the posts and for some time I have been wondering how the new guidelines are being managed.
Some time ago, there was a change where the off-topic post, like this one, seem to be banned. As we know our condition takes a lot of management and needs help and advice on our conditions as well as being able to laugh at ourselves. The later is no longer wanted here, yet there are still posts containing off topic photos, that are allowed, and other people get reprimanded for off-topic posts.
This does seem a to contradict the guidelines, yet nothing is done about it.
It is also unfair that a moderator can make a decision and there is no right to reply:
“They have been trained by HealthUnlocked and their decision is final and fully supported by me.”
This is a bit draconian to say the least. HealthUnlocked need to look at this, I don’t know any other place where there is no right to reply.
The moderators are trying to do a good job, they are volunteers and that also have a life, we should respect them, but the guidelines should also allow for redress.
Now for people that want the lighter side of things, I would suggest looking on Facebook or MeWe and find a group that allows you to have some fun and then allow HealthUnlocked to do what it is intended to do, a forum for people with a medical condition where they can seek help and advice. This site is very good for that, it just fails on the lighter side.
Take care of yourselves, seek the help that you need and find places where you can do the stuff that isn’t wanted in this forum
Written by
JulianJ
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The question is how many more of MeWe, Facbook members are going to come here and end up saying 'join us. If you are happy with both, why worry about how this site is run.
Hi Julian, it's nice to see you and I hope you are well.
I am sad that you still feel the changes in guidelines don't make you feel you have a place to share with us here , your contributions were always appreciated.
It's great that you have the Mewe group to cater for all those Social and Friendship needs that the HU group cannot always choose to include .
I always said , especially as people were making the move , it is great to have access to a variety of formats to help us with our Health needs.
It was a shame that it was sometimes viewed as a ' Us ' and ' Them' issue , people choosing not to take part in both I'm sure we're always supporting your efforts , not judging your choices , even if it seemed that judgements were being made , they just gave an opinion on what they wanted to do. It never meant that they were not supportive of your intentions.
I found it hard myself when new guidelines arrived. It was frustrating and appeared limiting at first . I posted and often got deleted , people probably have no idea how often this happened .
I spoke to , at first Kate and then New Moderators via PM , to voice my opinion and find out the reasons behind it. Finally , I decided to try a different approach. I didn't feel I wanted to make others feel stressed or cross by bringing the debate up in Public Posts , but still wanted to give my view, so instead asked questions via PM as to how I could both include some humour and lifestyle choices into my posts but still fit within the guidelines. Most importantly for Me too was that I did not get in the way of other members getting vital attention to their Serious Question Posts in time of need.
It all came down to making sure that my post wasn't just social but also included something about my progress with PMR/ GCA or a topic or tips that were relevant to Us dealing with Chronic Illness everyday.
And that language or topics were discussed that took care to consider the Multiple Opinions and Life Choices of our members.
We are were we are now , a balance of both some Social , some Philosophical , some Topical and Some Medical thought , which I think isn't actually that far from the Community style that people cherished before.
I know you think there is still a way to go for some , but I just hope you understand if I say in my opinion the Public Posts and discussions on this topic aren't doing any of Us good , particularly those that would like to see a change in Rules or Guidelines.
And, especially at this Time of Year , when many of Us are already suffering from added Stress , Anxiety , Grief at things Lost and additional Health Issues , it's not helping many of us cope with our main reason to visit the site , to improve our Symptoms.
So I ask , would it be possible for you , and others whom also might want to make a point from either side of the Debate, to try and resolve these issues via PM , with Moderators , then Charity Admin over the Holiday Season first .
If you still aren't satisfied with the answers by the New Year maybe then you could post a new Public Post , but in the style of opening a friendly debate getting views from all our Members , instead of as a more Complaint style format. I think you would get a lot more interest and feedback.
I just feel it will be helpful for those , like myself, that aren't as well as they could be , and just want to feel that they can visit the forum and find a Healthy and Positive Space when they are in need of comfort rather than controversy.
I hope you understand that I'm speaking from a place where I would wish everybody can get along and share together , and join and enjoy all the forums they want .
The Stress for some of Us of seeing these things popping up every few days does affect the Health and Wellbeing of many forum members , puts people off reading the forum's at all and makes them lose confidence in having a safe space in which to post their questions just when they are in most need , and I'm sure you wouldn't want that.
You are right, when the new rules were brought in we all had to adapt.
This site is run by a health charity for the benefit of sufferers of PMR and GCA and they want it to be just that a place where people can go to get advice and support
. As we are social beings it was becoming more social and the initial point of the forum was becoming obscured. It was to some extent inevitable, many of us don't get out much and welcomed the social contact, but that is not what the charity was set up for, so they changed the rules.
This forum is run by the charity and they have the right to change the rules as they see necessary. What is most important is that worried even frightened people who come here for help get just that. They get information, reassurance, understanding and shared experiences. They will find the world's experts willing to talk 1 to 1 and other people feeling as they do.
Of course friendships develop but they grow elsewhere, there are pleanty of other social media options.
This forum belongs to the charity and if you don't like the rules, then don't come here.
If you need the support and knowledge offered here you are welcome but obey the rules while you are here.
Rules are not going to be changed however much you complain or push at the boundaries, so if you want to be here, follow them.
The people who spend time here are mostly caring and not the sort to go and criticise those who have helped them on other sites, that sort of behaviour is not appreciated. Here we care about each other it is mutually supportive.
This constant moaning about the way things are run here is counter productive, it helps nobody., so either stop it or leave.
Hi Julian
Having been a Moderator on HU & a Member of MeWe twice, l took a break while Moderating on HU as l felt there was a Conflict of Interests.
I’d like to point out there is a big difference to PMRGCA on HU & MeWe in that on MeWe there is a Section where people simply chat on whatever subject they choose or what crops up in normal conversation & it remains Private. However HU is a Public Forum & what is written can be seen both on the PMRGCA Charity Website & if you Google a Topic it can lead you to HU
I, as much as the next person liked to post a Photo especially when my New Grandaughter was born, she was & still is the highlight of my life. I could write reams about her & her funny anecdotes but this is not the place. I still do mention her in a general way such as if l’m additionally tired, about my coping strategies if we are having her visiting for the day but that actually relates to my issues with fatigue so l feel it is justified.
Another example is a Post l did yesterday around an article on Filter Coffee & it’s effects on Type2 Diabetes, that is relevant as many of us are at risk of that. The Post itself became more light hearted but there was no doubt about its relevance.
If there is a particular Post or Comment you have an issue with, drop a Moderator a PM or Report it to HU; as everyone knows l’m no longer Moderating but that doesn’t mean l wouldn’t listen to your concern or point you in the right direction, l did that long before l was a Moderator.
That’s my take on things & l’d be happy to help in anyway l can.
Kind Regards
Angela
MrsN (Moderator - Retired)
Thank you for your comments.
We manage HU with a community of nearly 10k members with just two volunteer moderators who do a fantastic job. Our guidelines (found here - bit.ly/2s3L5gd) state that all topics should relate to the conditions of PMR and/or GCA - that covers a lot of things eg patient experiences, questions, concerns etc. We maintain a tight focus on the conditions so that the forum stays relevant for the majority. Within these topics there is the ability for humour and lightness, however you are correct, that other platforms (eg Facebook, MeWe etc.) are ideal for more general posts and levity.
If you have any concerns about how the forum is managed it is always possible to contact an administrator. These concerns, as raised here, should not form part of a general post. As administrators we will always aim to respond to queries with 2 working days.
Please note that copying content from private messages between members (whether they are your messages or messages between other members) is not permitted. They are private messages, and should remain so.
I am now turning off replies to this post, and hope that we can move on to posts that are helpful and relevant to PMR and GCA.
Candy
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The Lighter Side: Going Off-Topic. What Is this Community Forum coming to..?! ;-) 
