Two Forums ?

[mali42]

I don't know what has been going on behind the scenes but two almost identical forums won't work. I feel uneasy about the whole thing at the moment and i expect other people on here feel the same.

Malcolm

[s162216]

I quite agree here and I would like to make very plain how annoyed and p***ed off we are with UKPIP's for doing this to us and using such low and dirty tactics like having one of their moderators who was registered on here, go around PMing everyone to tell them to jump ship. I don't see how this is being supportive to those with PID by going around doing things like that when this is a large and fairly active supportive community that has been helping people for the last year.

Sam

[john]

Hi Malcolm,
I can't tell you how angry I am with the so-called support charity that has caused this upset.
I think we were far too naive and trusting in the face of some very determined and unprincipled action to absorb us or close us down, and from people who we welcomed and supported as friends.
If and when that support organisation fails, what then?
We will still be here because we don't want or need sponsorship, fund-raising and so on, we're free and reliable and independent.
Hope you stick by us.......

[prickles]

Dear All,

I have been a member on here from the very start, I was also one of the first to join UKPIPS. I think it very dirty and dispicable of them to start their own - sorry copy - this forum which has given so much support to people over the last year. I for one will not be jumping ship, I feel that I have made many friends on here, even though I have never met any of you, I feel that we are a family.

If they are not careful they will go the same way as the PIA. We are independent so will not be tarnished by money!

Sue & Caitlin

[john]

Thanks for these kind words Sue.
We promise we will be here as long as just ONE person needs us. We are all patients ourselves and we need your support too.
Although we'll probably never meet up in the real world I consider everyone I "speak" to on here as my friends, as you say we're family!!

[s162216]

I notice now that they've changed all the forum area names and descriptions ever so slightly and removed one area. From what I can see it seems to be modelled as a much more 'political' forum as there are areas for discussing benefits and work problems; I am still very angry though over the way that they messaged everyone to tell them to jump ship, thanks for sticking around here as its very upsetting to go from having an active support community to some lot that used to be friendly playing on our naivety by trusting them and then going and setting up their own forum and trying to steal our members away - I don't see that as supportive at all.

Sam

[mims]

hear, hear!! i am sticking with you!! best wishes and a happy new year to everyone.
maria

[john]

Cheers Maria, stick with the best and forget the rest!!
Seriously, thank you for your support on this day when we're all feeling so let-down by people we thought were our friends.
Happy New Year to you and yours and STAY HEALTHY!!

[mali42]

Hi all
Sam I can understand why you are so annoyed and I'm disappointed in the people that caused this issue.
I will be staying here and hopefully help support people who I have got to know over the last year.
Happy New year :-)

[s162216]

Thanks everyone, its good to know that at least some people still have faith in this forum.

Sam

[alittlebean]

Hello,

I've been 'out of the loop' for a little while! I have to say, I was very confused and a little concerned by the messages I uncovered in my inbox yesterday and clearly the 'goings on' have upset a lot of people. Although I don't get on here very often, simply knowing there are friends on here who understand and share the frustrations of having and living with a PID is priceless! I agree, two forums will not work. I'm staying on this ship if there's room please?

Louise

[s162216]

Thanks Louise, considering the numbers we used to have I think the ship can hold a few more!

This whole unfortunate situation that UKPIP's created by using dirty tactics to try and lure people to their forum has confused and upset a lot of people and I don't see how they can consider themselves supportive when they've actively tried to break up a quite large and active support group for those with PID.

Sam

[john]

Yes, it took us a whole year to gather together 140 people on our forum, and they want to poach the whole lot in a day without even telling us they were doing it right under our noses!
I, too, am really pleased you want to stay with us Louise. As I said yesterday, even if we have only one person on the board who needs our help, we four will promise to be here for them.
Thank you and speak soon

[keziah]

Ah well I obviously don't post enough to have people bothering to pm me - I was missed by whatever has gone on. To be honest I think I will ignore it and carry on here. I chose to join here!!

[john]

That's the spirit Keziah!!
Thank you, and post a bit more, try out the silly games, don't be a stranger - we value you here in our little cyber-community!!!
Happy New Year and stay healthy!

[willo]

Hi all

I don't know about the politics or empire building that is going on and I don't care, always found that sort of thing distasteful and destructive to the needs of the majority of people.

I do understand the upset felt by the founders and some members of this forum; I think I was about the 12th person to join this forum. However, from what I can see the UK Primary Immunodeficiency Patients Support charity's forum will be dealing with different topics and issues and therefore, in my opinion, is not a threat nor an alternative to this forum but a complement.

I have joint the other forum and will indeed stay an active member of this forum.

A charity cannot function without money so fundrasing is essential to achieving any goals so pointing the finger and saying we won't be tarnished by money is very naive.

I hope that those that have been upset or feel betrayed are big enough to set it aside for the good of sufferers and carers.

Stay well

[mali42]

Hi Bill
Thank you for your input.
I agree with you about the empire building and politics going on behind the scenes and I'm not the slightest interested in all that.
What upset me and was being put in an uncomfortable position of choosing forums and feeling like I am being disloyal to people on both forums who I have got to know over the last year.
I still remember the pia folding with the prospect of no forum which is always a concern for the future.
I do think it will put members off from joining in on both forums which does not help anyone with feeling like they have betrayed someone.

I don't know what the answer is :-(

[glowing]

Just a thought.
Two of my friends have not spoken to each other for years and the situation will never change. I have remained good friends with both of them and will continue. After the 'break up' I told them I would never talk about the other one to either of them and we continue our friendships without any problems.

Regards,
Gloria

[john]

People must do what they see fit, all I want is for the best for all of us patients. I have already said how I felt about all this and I'm not going over it all again. I will be here at this address as long as I am welcome, and that along with my volunteer job is enough for me, I don't have the health, will or fight left in me for all this.
I am not happy that this "us and them" discussion carries on on this forum, the line in the sand was drawn and we are moving on. If you are posting on both forums that's fine, like Gloria says just don't tell me about it!