Privacy and confidentiality - Fibromyalgia Acti...

Fibromyalgia Action UK

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Privacy and confidentiality

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12 years ago•11 Replies

As some of you may know the site was practically unusable yesterday so I went a wandering round the other fibro forums I could find....

Well I went on one .. And looked at all the recent posts to see what was talked about .. Was it like this forum.... I was horrified at what I found...

Admin had posted about two members NAMING them and explaining what had happened and what the disagreement was all about ... As one of the members named had never posted on the site but was a registered member I am not sure how the situation happened... BUT

On this forum... There would never be any airing of members disagreements certainly not naming and mentioning the incident so that people who would never have known about it could see it so openly mentioned as the incident was not a trivial thing...

Please be reassured that if you Pm any volunteers or FA what is said in PM stays in PM and it certainly reinforces my belief that this is a great site...

VG x

Edited by Admin This member has left the community, therefore replies to this post are switched off

11 Replies

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Fibrofoggiest12 years ago

Hi VG,

I too was more than somewhat bemused with some of the forums I dipped my little toe into before I finally came to roost here. Just like you I found them to be severely lacking when it came to their stance on confidentiality and privacy, hence why I either never joined or left pretty quickly. I know how important it is for members to feel secure with their information, be it in posting or in private messaging and I have found this site to be the best on all points by miles.

Thank you for your reassurance and for letting us know you and all the mods and volunteers take this matter very seriously indeed, we are SO lucky to have such caring and scrupulous people looking after the site.

THANK YOU

I agree, it is most definitely the best site I have been a member of

Foggy x

12 years ago

Thanks foggy .... Well yesterday was annoying here ..but an eye opener as to what can actually go on re other sites ...

VGx

jillylin12 years ago

I am shocked! I am gladf this site is different and safer.

Hugs

Jillyxx

tulips12312 years ago

Have to say VG, I think you do a fantastic job ('job' in it's loosest sense ie. without remuneration!) bearing in mind you have more than enough of your own stuff going on, whilst doing everything possible to support the rest of us! When I say 'you', I mean you and all the volunteers/admins etc. of course. Very difficult I should imagine, keeping balance on a forum with so many living with such awful/painful chronic conditions causing depression etc. I cannot tell you how much I value and appreciate the support not just from the members, admin/volunteers set the tone.

Feel like i'm babbling a bit (i'm tired), but you know what I mean. Thank you, and g'night. xx

snowbell12 years ago

Ahh was wondering what happened. I always pop in once a day, thought it was my phone! I have looked at other sites in past too and this is best. On a funny note, wel I thought it was funny in a warped way. I have aspergers, and I did look for a forum to join. Aspergers, means in a nutshell that you have socialisation issues, meaning you find it hard to communicate, say wrong thing, etc. well site I looked at had topics and I looked at responses, and it qas full of people arguing with each other and unsulting people and accusing each other of misunderstanding what someone had posted. It did make me chuckle, I mean, really, what did I expect on an aspergers site!! Sorry, it just amused me. Like going on a terrets site and being shocked by the amount of swearing I suppose!xx

kiwibutterfly• in reply tosnowbell12 years ago

:)) lol x

kiwibutterfly12 years ago

Thank you

spidey12 years ago

When I click community blog I come up with page topped with

Top common mistakes made by fibromites

I can only get the newest blogs by clicking through my e mail. I'm sure this will right itself.

fibro12 years ago

Thanks for your reassurance VG. Its much appreciated that you look after us all so well xx

sue3212 years ago

I've never had to look around at other fibro sites - this is the only one I would EVER use. Where else would you find so many other, like minded people who have a wonderful sense of humour?? You guys never fail to cheer me up if I'm feeling particularly low!! Fly the flag for Fibro Action!!! XXXXXXXXXXXXXXXXXX