Bring back the Pixie!: As most of you know a new poster... - NRAS

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Bring back the Pixie!

dtech profile image
48 Replies

As most of you know a new poster (free The Pixie) appeared bringing, in my opinion, a breath of fresh air to the site with her sometimes humerous and also interesting posts. None of which, as far as I could see, broke the site rules, or contained anything that would offend. Since then, for reasons unknown, her account got deleted. Not once but three times! Now I don't know if she has given up trying to get back on. I asked NRAS admin if they could tell us what had happened, but so far no reply. But if you are out there Pixie. I WANT YOU BACK. And I think others do too.

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dtech profile image
dtech
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48 Replies
woodstar1 profile image
woodstar1

Yep, I'm with you and Free The Pixie!!

FreeThePixie profile image
FreeThePixie in reply towoodstar1

Thank you woodstar :-) x

3LittleBirds2 profile image
3LittleBirds2

I WANT YOU BACK TOO PIXIE! Like Dtech says she was a breath on fresh air on this site with her informative and funny posts/links. Sometimes....well a lot of the time...this condition can drag you down and it's very easy to wallow in self pity but we are also human with hopefully a self of humour still intact. I hope she comes back but then again I don't blame her if she's decided not to, hopefully they are busy trying to sort her account out!!! Thanks Dtech for posting this 😊

FreeThePixie profile image
FreeThePixie in reply to3LittleBirds2

Hey LittleBirds :-)

Thank you once again for your kind words of support. It really does mean so much.

I'm back, but let's see for how long. This is my third attempt so far today to log back in and respond to everyone, my fingers are crossed (as best I can) I do hope HU can get to the bottom of it.

The last comment I responded to before losing everything again was from another user who was concerned what was happening might put off the newly diagnosed, as I pointed out to dtech, surely if anything it shows how kind & caring some of you are.

You have certainly shown kindness and support in my time of need.

Blessings, Gentle Hugs & BIG LOVE :-) xxxxxxxxxxxxxx

kalel profile image
kalel in reply toFreeThePixie

Pixie I am pleased to see that you are back. I have not read any of the replies you have had on this post been drivng for about six hours today and need to have a rest but Are you using a different Hotmail account when you sign up for the nras community because maybe they keep on deleting you because you are using same Hotmail account.

I do hope that the admins on this forum are able to help you out?

Hope you get things sorted and are able to stick around this time.

FreeThePixie profile image
FreeThePixie in reply tokalel

Hey kalel :-)

Thank you for your help. i

did wonder about that, HU have emailed today to say they are looking into it for me. So far so good, I haven't posted anything yet though! Maybe I'm safer keeping quiet ;-)

Blessings & Gentle Hugs x

kalel profile image
kalel in reply toFreeThePixie

well at least they are looking into it. Fingers crossed they will sort it out. I agree I would not post anything till you hear from them

Hope your having a good day. :)

lornaisobel profile image
lornaisobel

Yes BRING BACK THE PIXIE or explain why she keeps getting deleted. She made me feel better than all my drugs !!!

FreeThePixie profile image
FreeThePixie in reply tolornaisobel

Hey lornaisobel :-)

Thank you for your kind words, it means a lot to know my posts & sillyness made a difference, that was my intention for sure :-)

I do believe laughter is the best medicine ;-)

Blessings & Gentle Hugs :-) x

popsmith1874 profile image
popsmith1874

second that

FreeThePixie profile image
FreeThePixie in reply topopsmith1874

Hey popsmith :-)

Thank you x

Caza profile image
Caza

Here here bring back Pixie

FreeThePixie profile image
FreeThePixie in reply toCaza

Hey caza :-)

Thank you x

flow4 profile image
flow4

I sent an email to Healthunlocked via the help centre, asking what happened and whether she could be unblocked. I'm pretty sure what happened was that she posted so often, their security software thought she was a spam bot, but I figure that if other members ask about her, it might make them sort something out. I've also asked whether there's a limit to the number of new threads someone can start in a day...

FreeThePixie profile image
FreeThePixie in reply toflow4

Hey flow :-)

Thank you for your help, bless you. I have heard back from HU and they are looking into what's been happening in regards to my account & loss of posts. I shall let you know once I hear back, I must say this is my third attempt to log back in today but I'm here for now and wanted to make sure you all know how much I appreciate your support.

Blessings & Gentle Hugs :-) x

sandybrown profile image
sandybrown

From my experience, I thought my posts were informative but I was wrong, my write access was removed. Big brother policing method is very different I am afraid. Writing a post is very different to attaching a video clip and a link to take you to another location to get more information.

I hope this person can get read and write access.

FreeThePixie profile image
FreeThePixie in reply tosandybrown

Hey bala :-)

HU are looking into it, just waiting to hear back. Thank you for your support, it's much appreciated :-)

Blessings & Gentle Hugs :-) x

wiliby profile image
wiliby

I haven't been on for a while and intrigued by free the pixie! Has all her previous posts been removed as well? Would love to see what she was posting! Strange HU are being quiet about this and not replying to you all......

I have I clue what her posts were about, anyone enlighten me?

nomoreheels profile image
nomoreheels in reply towiliby

There was nothing contentious or controversial wiliby, mostly links & videos, all above board & NRAS admin have responded & informed both FTP & us this isn't their doing. I explained to her myself that if it was she would have been contacted by our admin team but she seemed sure that if she disappeared again that the powers that be will have deleted her account. She has contacted HU admin but apparently it's happened to others so I take from that she's not to concern herself, though she does understandably feel paranoid about it, well anyone would! Whilst I understand how frustrating it must be for her & other members unfortunately until admin sort it there's little we can do but hang fire. The whole thing is just a mahoosive blip I believe, certainly nothing sinister.

EmmaS-NRAS profile image
EmmaS-NRASNRAS

Dear dtech,

Thank you for your message about FreeThePixie. Apologies if you think you've not had a response from us - this is the third message I've posted on HU about this and the problems FreeThePixie is having with her account has nothing to do with the NRAS admins. We asked FreeThePixie to email the HU support team directly and, as I also mentioned yesterday, this is not an issue that is affecting just the NRAS site. The HU support team posted the following message yesterday to all the community admins:

"We have had a few posts on here recently about some user issues, including members being deleted by accident. We are aware of the problem and are looking into it, hopefully we will have a solution sorted in the near future- please bear with us until then!

I know it can be frustrating to not have immediate responses to emails, but we do look through and answer every email sent to us by users and admins alike. Sometimes, it can take us a little longer (particularly over weekends) but we aim to never let you wait longer than a week."

Hopefully they will have a solution to this issue soon and in the meantime, please contact HU directly with any tech-related issues that you have.

Kind regards

EmmaS-NRAS

(admin)

sandybrown profile image
sandybrown in reply toEmmaS-NRAS

Very interesting. HU, IT problems and deleting accounts by accident!!!

keeta profile image
keeta

Come on pixie .I agree I know it's soul destroying. But keep trying. Kathy.x

FreeThePixie profile image
FreeThePixie in reply tokeeta

Hey Kathy :-)

Thank you, bless your heart. I haven't given up yet, I feel sure it will be sorted.

I do hope you're ok and your blood test went smoothly. See, I said I will be here ;-)

All being looked into, so hopefully I shall be able to posts again soonest :-)

Blessings & Gentle Hugs x

allanah profile image
allanah

Come on guys .

I've seen three posts saying it's not Nras , it's techie issues , other sites are having the same problems! And to contact HU helpline , they are generally good if you have problems.

Maybe Pixie isn't posting if she's not very well, after all we all know that feeling.

have a good day .

What concerns me though people "believe" it was NRAS, which blocked her out. Without NRAS, we have no forum, would be useful to have some respect for hardworking NRAS staff than rambling on who "deleted" a poster? Who else could or would bother doing that unless she or he did it herself? It's always better to stop and think carefully before pointing a finger at or accusing someone who's entirely innocent! ;-)

sandybrown profile image
sandybrown in reply to

As you know there are many communities in HU, once up on a time there was Heart UK. Now it is cholesterol support, the reason Heart UK could not police and manage, may be we are heading in the same direction!!!

An account has read and write access, if you stop the write access then writing a post is not possible, can read all posts and can also send a message.

I lost my write access to Heart UK, this is because the policing did not like one of my post as it had a link and the link talked about Heart UK.

Now I have read and write access to all communities including cholesterol support.

All the administrators do an excellent job in maintaining the community sites. The question is "who can delete posts?" HU needs to clarify this for community members to get a better understanding.

3LittleBirds2 profile image
3LittleBirds2 in reply to

in my own opinion I don't believe anyone is rambling on....it's a genuine concern for someone who yes maybe unwell and needs our support!? NRAS have posted on here now also and yes it's out of their hands...but please remember these "rambling" posts are also a genuine concern for a member who we care about even though she was here very briefly!!

FreeThePixie profile image
FreeThePixie in reply to3LittleBirds2

Thank you LittleBirds, well said indeed!

I for one appreciate VERY much the support I have had regarding my 'paranoia' at the loss of my posts, all of them in fact & me too!

I am a real person with real feelings and It was distressing, so thank you from the bottom of my heart to those of you who "rambled" on my behalf ... What an AMAZING bunch of people you are! :-)

Love! Love! Love! :-) xxx

allanah profile image
allanah in reply to

I agree too . Give them a chance . Without this site I would not have got through the last five years X

FreeThePixie profile image
FreeThePixie in reply to

Hello coniston :-)

I just want to assure you I certainly didn't delete my posts and I am female! I am entirely innocent also, I posted what I thought might help others, silly posts, some with information other than we have here, that helped me at the beginning of my journey with RA/RD.

To see you say that people are "rambling" here I find disrespectful and dismissive of their feelings, nobody blamed NRAS, they were just showing concern and support for someone (me) who was clearly distressed at losing so many posts and being kicked out for no apparent reason on more than one occasion, the concern was most possibly due to the fact some of my posts may have appeared to be controversial to some? Just a observation of course.

dtech profile image
dtech

You may have seen it. I havnt and my question was in response to Emma's reply. She hadn't updated or replied so that's why I put this post up. I wasn't having a go at Emma or NRAS as I know they are admin not IT and do a great job. My request was asking if they could make enquiries on our behalf as we couldn't. And yes there may be numerous reasons why she has not come back on site. you have a good day too.

3LittleBirds2 profile image
3LittleBirds2 in reply todtech

Just one more thing....I don't think our respect or appreciation for NRAS was ever in question....blimey!!!

allanah profile image
allanah in reply todtech

That would be because their posts were deleted at the same time !!!!!! They replied to pixie, they wouldn't delete their replies to serious questions .

allanah profile image
allanah in reply todtech

I will thanks 😄Off yet again to rheumatology and waiting on pip assessment results and hand op next week . All go.

dtech profile image
dtech

I have better things to do in life than get in to a pointless on line row as to who said what to whom and why. So I won't be putting anymore comments on here. Byeeeeeeeeeeee 😃

3LittleBirds2 profile image
3LittleBirds2 in reply todtech

Yep I agree Dtech...I honestly can't believe the fuss...a genuine post supporting a member. No one was at all saying NRAS were at fault and we are all very grateful that they're hill....talk about mountains out of molehills!! 😶 going forward!

sandybrown profile image
sandybrown

Well, I was able to send a message using the message function! I will leave this to every one to debate on the account and its function. Write access and read access on an account!

FreeThePixie profile image
FreeThePixie

Hey dtech & Everyone here :-)

Well, HU have got back to me and they are trying to get to the bottom of what has been happening regarding the loss of my posts & links. In the meantime it appears I am back ... Don't speak too soon LOL

I have logged in twice and been unsuccessful, third time luck I hope ;-)

Yep, a mystery for sure.

Once again I would like to say a BIG THANK YOU to those of you who have been so sweet & caring, I saw this post & the responses earlier and was trying to let you all know it's being sorted and I'm back but so far I haven't had any luck, I do hope this one sticks!

Blessings, Gentle Hugs & Much Love to You All :-)

xxxxxxxxxxxxxxxxxxxxxxx

P.S For those of you who felt this might put newly diagnosed off using the forum, fear not, if anything this shows how much other users genuinely care, in my humble opinion of course ;-)

nomoreheels profile image
nomoreheels in reply toFreeThePixie

Further to my previous post your avatar's back & I'm able to reply to your post.

dtech profile image
dtech in reply toFreeThePixie

And you seem to have got your nose back :-)

sandybrown profile image
sandybrown in reply toFreeThePixie

A glitch resolved.

dtech profile image
dtech

FREEEEEDOMMMMMM. In the words of Mel Gibson :-) Good to see you back.

FreeThePixie profile image
FreeThePixie in reply todtech

LOL ... Yes indeedy dtech ;-)

It's good to be back ... Long may it last? :-Dx

nomoreheels profile image
nomoreheels

If you see this FTP I'm afraid we're unable to reply to your response, your avatar is in deleted account grey. Hang on in there, rather than driving yourself mad wait until admin solve the problem, we'll welcome you back then.

FreeThePixie profile image
FreeThePixie in reply tonomoreheels

Thank you nmh, much appreciated :-) x

nomoreheels profile image
nomoreheels

This is quite clearly an HU matter so can we please just wait until FTP is given the all clear by them to start over again. She's tried 3 times today & her avatar is still grey which I take to mean things are not sorted yet.

flow4 profile image
flow4

Just thought I'd share with you all the reply I had from HU yesterday... :)

"Hi Flow,

Thank you for getting in touch, and for your concern for the user and community.

FreeThePixie was not banned by the community, but by our spam filters, for a strange reason that we are currently looking into to make sure it doesn’t happen again. The user has since been reinstated and should be able to access the site normally.

Thank you for your concern; we really appreciate your support.

Best wishes,

Vesa Popova

HealthUnlocked"

nomoreheels profile image
nomoreheels in reply toflow4

Thanks for posting this Flow, I, like you, thought it could only be something along those lines but must say I'm intrigued as to what the strange reason is!

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