To Kate Gilbert

[Riversnan]

To Kate Gilbert, Please tell me why you have sent this to me. I have taken a screen shot of your accusation and my reply to you.

[SheffieldJane]

I would appreciate clarity on this rule. We often make recommendations of products to each other, is that not allowed?

Is this an error Kate ? I am sure that I am not the only one who feels unsettled by this.

Indeed we plug your book.

[Riversnan in reply to SheffieldJane]

I am puzzled and somewhat upset, I don't see I have done anything wrong, this has really ruined my day and I bought the book too.

[markbenjamin57 in reply to Riversnan]

Riversnan, I've just looked through a few of your posts and can't see you 'advertising' anything as such. As Jane says, many of us recommend all sorts of 'stuff ' to others - and this seems ok within the forum PMRGCAuk HU Rules.

It might just be some kind of glitch in the messaging process and / or a reply from Kate that was intended for someone else's Post, or a reply to one of yours? Occasionally, 'outsiders' do get in here and try to promote and sell (sometimes dodgy) commercial products whilst masquerading as PMRGCA sufferers. To me at least, Kate's message looks like a stern reply to one of these types of Posts.

I'm sure there's a reasonable explanation to this. Sit tight and try to keep an open mind until the answer comes...

MB

[Polywotsit PMRGCAuk team member in reply to markbenjamin57]

Thank you Mark!

[markbenjamin57 in reply to Polywotsit]

You're welcome Kate, all part of the service

[Hidden in reply to markbenjamin57]

What service? 😉 Car service? Or a valet ? 🤔😀🤡

[markbenjamin57 in reply to Hidden]

Ha Pete! Just call me 'Mr Super Valet'

[SheffieldJane in reply to Riversnan]

Don't be upset Riversnan, it would have freaked me out too. It's a mistake. If you get privately apologised to, will you let us know?

Perhaps a snake oil salesman has a similar name?

[SheffieldJane in reply to Riversnan]

Riversnan.......and breathe🕯

[Polywotsit PMRGCAuk team member in reply to SheffieldJane]

Hello Jane. There is no problem at all with genuine members recommending products or services that they have found helpful. This was a case of commercial advertising. As a charity we have to be very careful to avoid any whiff of commercial bias or endorsement.

[SheffieldJane in reply to Polywotsit]

Hello Kate, thanks, the site would lose a lot of its appeal if it was littered with products, pop up advertisements and so on. I am just sorry that Riversnan got hurt by this.

[Riversnan in reply to SheffieldJane]

Thank youSheffieldJane for your support.

[SheffieldJane in reply to Riversnan]

Riversnan, Do you have a grandchild called River?

Tomorrow is another day as Scarlett O'Hara would say. 😉

[markbenjamin57]

Very strange. Is this a mistake.. or crossed wires perhaps..?

[betty1943]

Why don’t we all just keep calm and wait for Kate’s reply, common sense tells us all Kate would not do this in an open forum!

[Polywotsit PMRGCAuk team member in reply to betty1943]

Thank you Betty! Please see my response to Riversnan.

[MayH]

Hi I am sure Kate Gilbert will be along to clarify but just wanted to say I read her post earlier today and I thought it was in response to someone who was indeed advertising their own product. It might have been removed and the mix-up ( if it is) could be because posts don't always appear in the correct sequence

[markbenjamin57 in reply to MayH]

A few here (including me) have commented that the screen format for sequencing and linking of replies and replies-to-replies etc can be a bit confusing - especially on longer threads... :/

[Hidden in reply to markbenjamin57]

I second that 🤗

[SheffieldJane in reply to Hidden]

Second what boom boom!

[markbenjamin57 in reply to SheffieldJane]

I Second That Emotion... ? (+ musical emoji if I could do one...)

[DorsetLady PMRGCAuk volunteer in reply to markbenjamin57]

How about 🎼🎼 (stereo of course) or 🎤🕺 accompanied by 🎷🥁🎺🎻!!

[markbenjamin57 in reply to Hidden]

Ok ok Pete, I heard you the first time!

[Hidden in reply to markbenjamin57]

I'm Pastit, what's going on? 🤔😉😕

[markbenjamin57 in reply to Hidden]

Don't worry Pete, it's all under control. Have you taken your tablets today (the little white ones..)? No one's laughing at you (well, only a couple of them..). If you're good, the Nurse will take you to the corner shop tomorrow. Do you want a nice cup of tea? What day is it today? Do you remember who was our UK Minister for Defence - and why he left his job? Ok, maybe you're tired now? Someone will bring you your Horlicks in a minute. Try to put your clothes on when they do?

[Hidden in reply to markbenjamin57]

Clothes! what clothes? Do you mean the white gown where they tye my arms round my back? 🤔or the one you wear when they lock the door?

Now this is getting silly, the Aunties will be at us soon 😱😀

[markbenjamin57 in reply to Hidden]

Ohh, nooo, not THE AUNTIES!!! :-(. Do you have a sofa in your xxx cell xxx room? Best hide behind it just in case...

[Hidden in reply to markbenjamin57]

No just padded walls. 😵😱🤡

[tgca in reply to markbenjamin57]

Omg and it's not even Friday!

[daworm]

Hmmm....I hope when I tell someone about a brand of something that I think is of good value and helps, that it isn't considered advertising...I have no allegiance to any companies...perhaps this is just a misunderstanding...I can understand "no advertising " that would not be good to be bombarded by ad's on this nice forum..

[Polywotsit PMRGCAuk team member in reply to daworm]

No, it isn't regarded as advertising at all. We want people to share information and resources and ideas.

[PMRpro Ambassador]

The reply is to someone who had registered that day and then advertised some drink or other on the thread - it was a direct link to their website. I reported the link to HU and Kate has obviously dealt with it - the post I saw is no longer there - but because the post is deleted it looks as if she is replying to you because this site doesn't show who a post was addressed to.

You can tell someone you use such and such and it does this and that, I do it all the time, but blatant advertising is not allowed - and that was. Honestly!

It isn't a personal slight on you - and as Mark says, the nesting system on this site is hopeless!!! It has caused confusion in the past and I have no doubt will continue to do so.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Thank you. It might not have helped that I was working from my phone and not a proper 'pooter.

[PMRpro Ambassador in reply to Polywotsit]

Very likely. But this forum is - as I have said before - the most user-unfriendly format I can imagine!!!!!!!

[sondya in reply to PMRpro]

Agree!

[Longtimer in reply to PMRpro]

Yes, I haven`t been on this website for long, and I`m glad the problem of the nesting system has been brought up, I thought I was really missing the point about was going on....and with pred head it doesn't take much doing....

[Celtic PMRGCAuk volunteer]

Hello Riversnan, knowing Kate and all that she has done and still does for PMRGCA, this is definitely a system mix-up. So sit tight, Kate will shortly be along to set the record straight. It is because of the possibility of misdirected messages that I have always tried to start replies off to anyone by prefixing it with their name.

[Polywotsit PMRGCAuk team member in reply to Celtic]

Thanks for the headsup - I was on the train back from the Scotland research roadshow!

[Celtic PMRGCAuk volunteer in reply to Polywotsit]

Knew there had to be a mix-up, Kate. Sounds like you've had another busy day at the office! Hope the roadshow went well - another great success, I'm sure.

[Polywotsit PMRGCAuk team member]

Hello

It must have been horrible to think you were being got at for nothing. This reply was not addressed to you at all, but to Ceiba Drinks who had posted a blatant advertising link onto your post. I received a report of abuse via another user and acted on it as admin. Ceiba Drinks then left the forum and deleted their post. I am very sorry that you thought that it was directed at you. However, as you say, there is absolutely no reason why I would do that. There is a big difference between one forum member recommending something that they have found helpful, and a commercial company using the forum to promote their products. Please be reassured and accept my apology for the misunderstanding.

Thanks to the members who expressed some faith in me - I feel terrible when something goes wrong.

Regards

Kate

[PMRpro Ambassador in reply to Polywotsit]

Patient.info won't allow editing of any sort by the member and you have to ask to have things deleted. In a case like this I really do see their point, irritating as it is not being able to correct the error you only see AFTER pressing the button!

I wonder where the pesky marketing person has gone - bet they have found another less picky forum somewhere...

[Riversnan in reply to Polywotsit]

Thank you for the apology and I am so pleased it was a mistake, I have been having a flare this last week and have been more fragile than usual, normally I may not have got so upset.

Riversnan

[sondya in reply to Polywotsit]

Good god, how did this happen? Thanks for the clarification, Kate. As a newbee to disease and one year since GCA diagnosed, I have found the experiences and goodwill in sharing very helpful. I am not into turmeric, cinnamon or any infused concoctions or any innocuous panacea but if it helps someone why not share it. Puzzled to understand, though, how a company can post a link into a member's comment.

[PMRpro Ambassador in reply to sondya]

They join the forum as a person, just as you or I did. And post a reply with a link - as I often do. Except I'm picky about what I put up!

Never forget - this is just social media with no real rules about who can join. Although if they are caught being naughty they are told off but HU is a bit lax about banning people. patient.info is REALLY strict. All except pre-approved links are caught by the filter for moderation.

Anything you write on here is really open for public scrutiny - all they have to do is come to the site and they can read a lot, to read it all they just have to join.

[Riversnan]

Thank you to everybody who has posted today, I have appreciated it.

I am sure you will all know how it must have felt to be told you "don't belong" to something you have had nothing for praise for. This site has helped me so much to cope and understand this illness and the thought of being unable to belong any more really upset me.

I thank you for your apology Kate, I realise you are very busy and mistakes happen.

I am glad to still be a PMRer.

Riversnan

[Hindags in reply to Riversnan]

Riversnan, "Glad to still be a PMRer" ? You made me chuckle. Glad you are still here. Not glad you or anyone else here has to deal with PMR of course.

[Sandy1947 in reply to Riversnan]

So glad the apology came! PMR makes many of us sensitive and edgy anyway so to exacerbate those feelings is horrible.

[sondya in reply to Sandy1947]

Oh tell me about it, Sandy1947. I play sport and my friends have learned to point out 'blame it on her medication' when I get tetchy!

[Sandy1947 in reply to sondya]

I’m tetchy a lot of the time...particularly in traffic! Never heard the word “tetchy” before but it def applies!

[Elaine-W in reply to Riversnan]

Hi Riversnan

Glad this has been sorted out and that you are still a belongerer. Our ever so slightly crazy family would miss one of our peeps. Normal service resumed xx💐

[Riversnan in reply to Elaine-W]

Thank you once again for all of your support from the fellow PMRers.

I just would like to say, I hope thatKate is also ok today as it was obviously a mistake and it has caused her stress too.

I now know it was not intended for me.

[Polywotsit PMRGCAuk team member in reply to Riversnan]

I'm fine thanks except that I've just put my back out in the garden!

[sondya in reply to Riversnan]

Hang in there, Riversnan. "Do not belong"? Hey, isn't that everyone's ambition? But for the duration - look after yourself, keep well. Cheers

[Cinka]

💜

[Hidden]

Blimey!. It's Eastenders, Corrie, Archers & The Wire here. Who needs tele!

[pmrkitty]

I love this group of PMRers! I've kept quiet as I'm pretty new, so glad to see it all straightened out.