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PMRGCAuk
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Why are we blocking Melissa ...... so wrong. She has been an interesting and lovely lady and an inspiration for us all wit h this disease. Thank God we have a sense of humour in our life. Please give her support to get her back on here For some she is a life line this disease needs support with people who have it and want to get through it. All Melissa was doing was trying to put a lighter side on it. Not to take it away from HU. She is an amazing writer and I hope one day she is acknowledged as just that. Sorry for this blog but Needs Must Sometimes . Xx

My dog who needs the world to me too

Perhaps sometimes we just need to put the world in perspective xx

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Are you sure Janette? She has been responding to posts today and sounded quite cheerful.

She has a lot of support and many, many people love her blogs. I haven’t formed the impression that she’s leaving. Maybe she’s busy organising her closed PMRGCAUK page. Are you on it yet?

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Melissa just messaged me: 'my access to HU PMRGCAuk has been "restricted" and I cannot post, nor can I comment on another member's post. I can "read only" and send Chat messages...'

This is I think outrageous and very unfair and I for one would like to know what the criteria is for such a decision - so ALL of us don't feel vulnerable to what might appear without further information to be an 'arbitrary' decision. To ban a member from future postings is quite an extreme act - and could change for me what I think about this site. Yes there have been differences of opinion here (and 'hooray' for that) and sometimes yes even 'irritations' - but so what !!?? - we are all adults and as long as debate is civil I have no problem with that. I feel VERY disappointed this has occurred and although I think Melissa has been a fantastic contributor here on numerous occasions - and often 'saved me' from the insanity of this illness - I would also protest strongly if anyone else was 'restricted' this way without some public statement from the Moderators/Administrators as to 'WHY' this has occurred - so I hope this is forthcoming...

Best wishes

Rimmy

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Has she had anything official from them?

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Yes YBB she has xxxxxxxxxxx

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I agree with you completely. What can we do? A petition? She posted a few times today in support of others. I better check my messages. This seems very extreme. Has it just happened? I agree it does strike at the safety I have always felt on here and my feeling that we are pretty good at self regulating. Her positive contribution has been huge!

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Darling if you have access to the facebook page she started she discusses it there. xxx

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I closed my Facebook account. My daughter didn’t want photos of the children on there. That was the main joy of it. Also I put a fake date of birth on there that turned up somewhere else so it put me off. Does she think that there have been complaints?

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Same with our grandson so we have our accounts on face book.lockes down so it literally is Just friends and family that can see anything. It's sad we have to do this through.x

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What happens now? Can we complain or something.

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It’s true - Mel PMd me to say what’s been said to her - disgraceful - I fully support her. I hate this cloak and dagger stuff - makes me feel uncomfortable and I won’t put up with being made to feel like that - leaves a nasty taste. Feels like she has no right to reply!

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What have they suspended her over? She has to be given the chance to refute the reasons they have suspended her on.

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Apparently some took offence to her ‘Now’t So Queer as Folk’ post - I’ve not been privy to any of it - and blocked her from everything except ‘read only’ so she will be reading all of this.

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Thats ridiculous and who the hell would take offence to what we were saying. It was a debate and we had different opinions. We are.all.adults and I object to being treat like a cjild

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My sentiments exactly, state your objections and move on. Not guilty m’lord!

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There is nothing on the posts that anyone should take offence to as far as I can see. This is stupid because nothing Melissa said upset me and I was the one involved in the discussion.

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Same here and I’ve had plenty of likes for my response. This needs to end right here right now!

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Totally agree. i have likes to my comments. I want to know who the hell felt they needed to complain.

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Totally agree , we may have had different opinions but as far as I could see that was not a reason for a suspension.

Has someone reported her? If so , she should get the chance to a right to reply , and get to make an apology if that person needed one and if she felt that was deserved.

It seems very sad , and a little scary, especially to people like me and you YB , if you can have the chance to make valuable or funny contributions on this forum taken away with no chance of redress over a difference in opinions.

Bee x

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Apparently someone had complained but not sure which part of the whole discussion they didnt like!!

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I understand that Melissa asked for examples of the posts/messages that had offended and so on so that she didn't offend in the future...but I don't believe she has been provided with them as yet.

Hopefully, it will all be sorted out sensibly as it's a silly state of affairs to block her!

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Apparently some were offended, and from what I can gathe, took it very personally by certain remarks in the said post - they obviously weren’t able to deal with it other than by making an official complaint. Mel has asked all the right questions to enable her a right to reply and hadn’t heard back at the close of play last night. The admin team are volunteers and don’t work 24/7. Hopefully it will be resolved but has left a nasty taste.

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I have read and re-read the whole debate and I can not see anything in it that is worth complaining about. This was a debate and should have been left alone for the ones involved to sort out. It wasn't abusive or threatening and who ever did complain needs to seriously look at themselves if they thought it was!! As this was mainly between me and Melissa and as both of us are "big girls" we really don't need "help" like this to sort out any differences of opinion we have.

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So it’s definitely not a blip on the system? I lost access on the Friday/ Saturday it happened. I couldn’t even open posts.

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Definitely not a blip in the system. Seems HU have gagging rights!

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There was a problem site wise rhe other dau.whicj is.probanly what caused you problems.

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it is not a glitch. she was told she could only read and use the chat but NOT comment on anyones post or post not he site. I do think we need an explanation from Big Brother.

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All the posts on Saturday just did not appear, they appeared last evening, I wondered where I had been.

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I'm not even sure she can send chat messages.

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HUGE!!

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Rimmy you are a shining example to me and others I am sure. Thank you for being able to raise this so marvellously xxxxxxxxxxxxx

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Yes , I agree , Rimmy has done a good job in delicately bringing this our attention so that we can show our views against taking people's access away without giving them chance to defend themselves or make changes that they didn't know had upset someone.

It's a shame , Bee x

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Yes Jane it's true she has been restricted to reading posts only. :-)

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I am going to sleep on it, otherwise it will be another sleepless night. I can feel myself getting wound up.

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If you can do that it’s wise- I’m sure it will get resolved to our satisfaction - we cannot cope with this kind of upset, I’m needing to take some paracetomol to ease this stupid headache now grrrrrr!

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I’ve got earache, it’s weird, it happens when I don’t want to hear something.

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It’s the stress, and it’s not fare.

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Spelling again SJ. Think it’s cos I’m getting clever since cataract op and don’t need glasses- but they do get tired!

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that is interesting. we realized that our daughter got what we eventually called hot ear (her ear turned red) if her father and I were arguing. (sad.) but we are all good now. (not fighting now that we are toddling off into the sunset together. haha! ) . I think she still gets it when she hears things she doesn't like.. a bit like you!

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Louise Hay explains this thoroughly xx

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I remember her books being a comfort maybe 20/30 years ago.

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Thank you! It started during a period of awful news in my life.

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I used to read Louise Hay but I got tired of her whole blame-yourself-for-your-illness. She was entertaining though. our dog had terrible skin troubles and we would pet him and say, You are safe in this moment in time. You are safe in this moment in time. You are safe in this moment in time. and He LOVED it. THE prednisone however helped his skin! haha

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🙂 I think she was on to something with the parts of the body that go wrong. There is a kind of poetry in it. The onset of my PMR for instance “ I couldn’t shoulder the burden any more” “ I cannot walk another step”. That fits with where the illness struck and of course my blocked painful ears against bad news. I found studying ancient homoeopathy books fascinating in the same way. Actually that was very funny about your dear dog. Good for Pred.!

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Had a message from Melissa. We need to support her. HU has 'silenced' her. She can't write/reply to us.

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If they have blocked Melissa them in all fairness they should have blocked me as well because I was the one discussing this with her, if its about the fb page?

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Thanks for this response as it highlights the significance for any or all of us to be 'blocked' without a fair explanation - this is not just about our 'opinions' - it could obviously happen too 'easily' to anyone here ....

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Exactly , we had a discussion in an open forum , we didn't make complaints or reports , and if reports were made Melissa should have the right to reply and then make a choice on what to do next . xx

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There has to be something we can do about it.

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Let’s hope they’re reading our replies! It’s disgraceful treatment - I thought they gave a private ticking off if a complaint came in - not red carded! Good job the steroids subdue is. I’ve given M my support via PM - she doesn’t need this upset 😠 pre- surgery.

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Me too. I hope it is private. I feel all unsafe now.

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Exactly what I told her. Nobody needs that sort of treatment, and ESP before a big op.

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Do we know if Melissa knows why she was banned or if she has been asked to apologise for something that she doesn't think is right or reasonable to do.

Because it's all behind closed doors it must make it terribly confusing and stressful for Mamici as well as those reading that it has happened.

Hopefully , it can be sorted out amicably , but I assume that will mean stress for Melissa in various chats with the administrators , don't know wether we can do anything to help her.

If we can , and anyone finds out let us know, Bee x

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The one tangible criticism that was levelled at her was the sheer popularity of her posts that generate so much discussion and therefore very long threads. This in turn makes hard work for the volunteer moderator (s) .This puts all our popular posters at risk like MB, Pepperdoggie, and Blearyeyes because they generate a lot of chat too. She was the one person who really expresses the high emotions of this condition and was therefore hugely relevant and therapeutic to others. I am expecting this thread to be closed soon. Freedom of expression does not seem to apply here. I guess that’s what started her idea of a separate space. I am beyond sad.

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The private chat is private, don't worry about that but I want to know how we clear this up. I would also love to know who felt the need to complain because I am capable of dealing with problems myself as I am sure Melissa is. X

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The thing is, you can't private chat everyone, YBB. And it's the give and take between members from all over the world, with different (or the same) issues, and different modes of expression and different coping strategies that makes it such a great place.

With very, very few exceptions over the 2 years I've been visiting, among thousands of discussions and conversations, people have treated each other with compassion, with interest, with support, and with respect - even when they disagree or are diametrically opposed.

What I see is that even when we don't understand where someone is coming from, we care about them.

That can't be replaced with a restrictive approach keeping all discussions clinical and scientific. We're not clinicians or scientists. We're people communicating with each other about our successes and failures, our progress and our setbacks. What this board does is to blunt the isolation and the fear and the desperation, and gives us all hope that we will get through it.

Shutting down and shutting up one of the most powerful voices with whom we all identify is a demonstration of the heartless power of authority we are all here to avoid.

It's just plain wrong. Whomever has done this is disruptive and destructive. And they're not going to like what I write.

That's gonna have to be their problem. I have a history of calling out bullies.

I'm doing it here and now.

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Total agreement x

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I agree totally and as for calling out bullies count me in. Who ever did this is pathetic and nasty. We were having a debate and there is nothing abusive, aggressive or upsetting in the whole conversation. Me and Melissa are adults and we dont need intervention.

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I agree with you. I rather enjoyed your back and forth with Melissa and I suspect she did too! There was nothing nasty or vindictive. You were disagreeing but it was respectful...and actually even if it had not been...we can all choose NOT to read. Or ONE of us could say hey, you two (whomever it might be.. knock it off.) Happened to me before..and big Brother or sister got into the fray..but actually after someone said something like we need to agree to disagree and we had stopped. ... but I was scolded.. like a 5 year old..but not kicked off. (

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I know, it does seem an excessive punishment for having a debate and I am still at a loss as to what was worth complaining about. Let's hope.it will be sorted soon.x

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No way. Don’t even say it 😭😭😭😭😭. I can’t imagine life without this forum

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Better not shut it down, even though I don’t chat a lot lately ( not being well ) I still read comments !! It helps me x

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This “ banning” has caused far more harm than anything anyone has posted in my view. It is very damaging to potentially 8000 people and the site itself. Not at all democratic or typical of the site that I have come to love over daily visits for 3 years.

The occasional person whose first post was clearly intended to make mischief disappeared. Most of our regulars have a real relationship with mamici1. It is like losing a family member. I begin to doubt the motivation behind the ban.

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M has asked for an explanation but she hasn’t received a reply as yet and as they’re volunteers she won’t hear until later on today now.

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It’s gone midnight. What a cruel time to choose.

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They know what they’re doing.

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Exactly! On that basis we should all have been blocked

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Did I!? I don’t even remember 😭😭😭

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Please don’t get upset Daisychain, this is none of your doing. Better heads than ours are looking at the issue - and breathe....... 🌼

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Jane I don’t want anyone to be upset. You are all such good people xxxx

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Just sit back and watch how it sorts itself out. We have good alchemy here. 🌷

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It isn't Kate - Kate has finished as far as I know.

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I thought Kate had quit..before this.

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Yes! My mistake, sorry. 🌸

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We all live in glass houses , and we all throw stones.

I don't understand why when the stones are thrown , the administrators aren't just helping people mend the windows , not actively breaking more.

People should at least get the chance to know the complaints and make amends before being thrown off the map.

Nearly ended up in that boat myself.

Not matter what our differences of opinion are as individuals in a group , we should still have the right to voice them , agree to differ and move on like adults.

Closed reports , closed accounts , no discussion , this way a very sad system with no diversity lies.

Bee x

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There is a comment asking melissa to stop commenting on the post. A bit unfair when you look at thr comments she had made on that post.

As has been said, without our stories this place will become very dry, we need the lighter side of life and as adults over a certain age we shouldn't be acting like snowflakes.

I do hope the person or persons who complained are reading this post and realise what they have done, not only to Melissa, but to this forum.

We all now live in fear of censure and that is very very bad.

I had a private telling off from Kate, no big issue, we resolved things very quickly and I fully support the action that was taken then. But this is different, we now don't know what is safe to post.

When I've posted they have been personal posts about how I feel or what I have been doing, now I have to think hard about what I'll post.

Admins, well the one who is dealing with this, please, for the good of this community, look at all of the evidence and give Melissa a chance to respond to all of the commplaints made against her and her posts.

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and realise she has more supporters than detractors so consider that!

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I had a private scolding too.

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The last person who scolded me was my father, and even he gave that up when I turned 18.

No one else gets a shot at it.

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I am beginning to think that the motivation was jealousy. She is so popular. Perhaps the site no longer fit the early vision for it but it was magnificent and unique. I have tried other sites and found them sometimes unfriendly, neglectful of others and prone to unhelpful, misleading comments. Even ones purporting to be for mental health problems. Our culture is a force for good and is attractive to a really diverse community. I was so proud of it. Surely it was a big success for HealthUnlocked and the PMRGCAUK Charity? mamici1 was a massive part of its evolution.

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I don’t know if it was jealousy, SJ, but I, personally think that admin were probably very protective of their ‘baby’. It’s possible that they were afraid of the new FB page diluting the strength of this wonderful forum. Maybe the motivation was fear? Anyway, too harsh 🙁. B.

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Jane, it was not jealousy. I am not going to mince words, but this was my impression...

I was part of the "private" conversation between Kate, another individual and myself and what I understood was the main issue is that Melissa's post cause too many comments, usually off topic (PMR/GCA) and it is too much work to administer that with limited budget/manpower. We are not behaving as bunch of docile, old people and we are not suppose to have too much fun. Discussion has to be on the topic, timid and limited to medical side.

So if you agree with those restrictions, then so be it... But if you don't, then let's make sure that admins understand that and rectify the situation. We should log our complain with admin and hope they care.

If that does not work, then we go to plan B..

P.S. don't assume that private messages are really private... admins have access to everything.

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They certainly don't on patient - if a private message is reported they have access but not otherwise.

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That’s me stuffed then 😂 and I mistrust Facebook!

I must say that this forum has revised my opinion of the next decade. These people are amazing! I am so glad to hear that mamici1 is back!

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I agree shazstep!🙄

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Totally agree

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What is the name of the Facebook page please, I’ve been away for a bit and am even more confused than usual.

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Thank you

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why? Hearing this is interesting. Perhaps WHY would be a good place to start.

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It's really a shame so much turmoil, but please everyone, put things in perspective....

Melissa is a big girl, and I'm certain that both she, and the administration will get things sorted out between themselves very quickly. I too hope , that Melissa's ban will be lifted. 🙏

YuliK. 76

Started 25mg Prednisone

Today 7:5mg

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A sensible response Yulik! Melissa,as we all know, is perfectly capable of speaking up for herself. The ' powers that be' have a hard enough job as it is without this!!

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As this debate was between mainly me and Melissa and because we are both able to stick up for ourselves this should never have happened. I for one don't need an ajudicator to block people because they have a different opinion to me. But its all sorted now and Melissa is back on line. xx

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how did it get sorted? Since it obviously will happen again to someone. I would like to know how one sorts this sort of thing.

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We sort it. Please don't worry yourself.

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Are we blocking her ,I am not ? Can we sign a posted statement asking for her to be un blocked . No comments just add ourselves to the list and show of numbers .If this isnt resolved soon .

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Why not? It's disgraceful - the whole episode by the sound of it. I've been away in Lapland for a week and of course most of the argument has been wiped off the face of the earth - certainly from this forum.

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She's back online now.x

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Good to hear, now let's return to normal service. 😃

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I was only asking why ?

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Sorry - my reply to you was to the part about posting a statement.......should have made it a bit clearer......

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Ah I see .;-)

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She's unblocked now thankfully but last night all she could do was read posts. It was a ridiculous thing to do over what was a debate.xc

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I honestly believe it's time to put this saga to rest. 🙏

Melissa is back and that's the main thing.

Have a great pain-free day everyone.

YuliK 76

Started 25mg

Today 7:5 mg. 👍

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Melissa. I would like to offer my support. We CAN choose which posts to read. We are all free to express our opinions and should treat other contributors with respect. Behave in a way we would like others to behave with us. Valerie

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Oh Melissa,l am so pleased you are back with us,l agree with all the previous posts,we love your contributions on this forum,those who do not appreciate any posts on here are not forced to read them.they would spoil it for most of us who love the lighter posts,it can really give us a lift to lighten up a bit,this PMR/GCA can really drag us down and there is always plenty of help advice and information given herewhich l am very thankful for,but l enjoy the lighter side too. There is also warmth and empathy which can help those who are feeling really down and depressed,if they can be ‘cheered up’that can be very beneficial .Welcome back dear Melissa xxxx.

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I’ve only just read these posts. No idea this was waging on the forum. Ridiculous is the only word I can find. I do hope it’s resolved, Melissa is a valuable member of the community. A strong, sensible, supportive voice. We are all entitled to have an opinion. This seems as one member states using a sledgehammer to crack a nut. Heavy handed. We are all old enough to decide to read or not to read. If you don’t like it don’t read it. Very disappointing and that’s putting it very mildly.

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I think to be fair all round that the "Nowt so queer as folk" post did start to descend into what appeared to be a quite testy slanging match - and at least one person expressed publicly being upset at the tone that was developing. Because of the time it takes for something to be looked at closely it may have progressed by the time any decision was made. Kate would probably just have shut that thread down and left it at that - but Kate is no longer moderating (as far as I know at least) and so far there is no replacement, others are covering.

I think there has been some concern that more recently the forum has diverged a long way from what it was set up to be originally: an online helpline with reliable reporting of experiences and knowledge about PMR and GCA. And for anyone moderating, the massive non-PMR/GCA threads are very very difficult to follow and monitor and take up a lot of time on something that isn't really what the charity is aimed at. It is a difficult question - I don't know what the solution could/would be either.

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I actually run a local website that includes a discussion board. I have six administrators and we just rely on people reporting bad posts and generally just have cursory checks otherwise. It seems to work pretty well just relying on the users to report overall.

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I personally think FB is a better forum for Melissa and this is her FB page in case you want to still follow her. Title of her FB page: PMR/GCA ...because sometime you must laugh to keep yourself from crying

Link: facebook.com/groups/PMRGCA/

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