As mentioned in earlier postings I have now set up a forum where people can discuss delicate and legal issues without their postings being made public. 

I've tried to create something where people can go to discuss things in private.  However, I want to make a couple of things quite clear:  I do not have Andy's expertise; this is just the sort of thing that anyone with a Hotmail account could set up.  However, it will make a place - I hope - where people can go and discuss things without their postings being made public.  Anyone can take part but 'membership' is by either invitation or by following the link at the end of this post and 'applying' to join. I should make it quite clear now though that this is not a place where people can go and hurl abuse at others, use bad language or do anything to upset other members.  At the moment I have control of it and hope to extend this to others in the next few days and - like Andy has done in the past - I will not hesitate to remove abusive postings or retract membership.  It's not perfect, it's not even halfway sophisticated; I haven't got Andy's skills, but it will provide a place to go to discuss things that are best talked about in private. You need to be absolutely clear though, that if you join in you will be expected to behave reasonably and considerately to others

The remit for the new forum, along with the link for applying to join is, is as follows:

The taintedblood private forum has been set up as a facility for those people who, having visited the TaintedBlood website, think they would benefit from having a forum where they can engage in discussions that are not in the public domain.  Please note that although anyone can join, their membership has to be approved by the owners - i.e. the TaintedBlood committee.  Membership can be revoked at any time, with no warning, if the committee feels that anyone is behaving within the forum in a way that is likely to hurt, upset or cause offence to another member.  Please note that this forum is independent of the TaintedBlood website; however we still demand that members behave and post responsibly.  Please also be aware that if you take part in a discussion on the forum your name and e-mail address will be visible to other members.

As soon as the new forum is up and running, could I ask that you do not post any more on the Tb blog with regards to the US litigation or similar subjects?  I am not trying to be dictatorial; simplt trying to save this valuable esource for all those who rely on it.

When you apply to join you will get a message asking you why you have applied.  Please give us as much information as you can, so that we know it is a genuine application.  Please also note that if you take part in discussions your name and e-mail address will be visible to other members, so you may want to consider setting up a new e-mail address and user name.  I will, however, need to know who you really are in order to approve the application, but I guarantee to keep your confidence.

I hope this helps, but if not then I really have done my best.

Sue

http://taintedbloodprivateforum.groups.live.com/?sa=28531900

 Much appreciated Sue. Thank you.

 Sue,

I have tried to register for the " private forum ", As I have not heard whether I have or have not been " accepted " I do not know if I have completed the application correctly. I know you wanted as much information as possible to check I was legitimate, however with a 250 character limit, there is not much space to go into too much detail.

Please advise !

Thanks, Woody. 

Hi Woody.  Sorry about that!  If you e-mail me with your details Ill send you an invitation that should get you straight on.  Let me know if it works!

Sue

suethreakall@hotmail.co.uk

The TaintedBlood private forum has been set up as a facility for those people who, having visited the TaintedBlood website, think they would benefit from having a forum where they can engage in discussions that are not in the public domain.  Please note that although anyone can join, their membership has to be approved by the owners - i.e. the TaintedBlood committee.  Membership can be revoked at any time, with no warning, if the committee feels that anyone is behaving within the forum in a way that is likely to hurt, upset or cause offence to another member.  Please note that this forum is independent of the TaintedBlood website; however we still demand that members behave and post responsibly.  Please also be aware that if you take part in a discussion on the forum your name and e-mail address will be visible to other members.

http://taintedbloodprivateforum.groups.live.com/?sa=28531900

Dear All,  Is there anyone out there, or have you all gone to the private forum, Question,if your not involved in the U,S thing but are involved in our campaine ,will you be refused entry into the private forum, only feeling quite lonely here. Alfies Dad

Hi Alfie's dad.

No, of course you won't be refused entry!  The forum was not set up specifically to discuss the US litigation but as a result of problems incurred when that subject was discussed on public websites.  I specifically set it up so that if, as anticipated, other blogs/bulletin boards and so on close because of this, people would have somewhere to go.  It's not private in the sense that it's a closed shop, just a non-public place where those infected and affected by contaminated blood and blood products can go to talk away from the public eye.

There are already a whole range of different subjects being discussed there at the moment and is so far proving to be a place where people are treating eachother with courtesy and understanding.  Human nature dictates that people won't always agree on things but different views can still be aired responsibly, I think.

Just follow the link below, tell me who you are and I'll put you in straight away.

Sue

Well..its official..The MFT Bulletin Board has gone..kapputt..finito..died and gone to blog heaven after life support was switched off

RIP MFT Bulletin Board..Eulogies please...

We'll cope!

http://taintedbloodprivateforum.groups.live.com/?sa=28531900

i am sad that some could not cope .

MFT BB has now gone. Is it true that TB BB is to go?

Hi Jenny.

I'm afraid it is true that we are more than likely to lose this blog as well.  I should point out here that the TB committee are very sad about recent events and that we are doing our utmost at present to sort out a satisfactory outcome.  The committee have never had any direct control over the website, just access to some of its elements such as the Timeline and the Media pages, so there is absolutely nothing we can do to stop this happening. 

I am not sure what will happen when but would urge you all to join the private forum (link below), where we will post regular updates.

Sue

http://taintedbloodprivateforum.groups.live.com/?sa=28531900

 I’ve had a few requests recently from people wishing to join the Private Forum.  For those of you who may be unaware of it, it was set up originally following the closure of the MacFarlane Trust blog, so that people could chat about things on a site that wasn’t open to the public.

At the moment there are a whole load of discussion threads and people are posting on it every day.  Much of it is similar in content to the TB blog and all the important posts from the committee are duplicated on both blogs.  If you’re not a member and would like to try it out, first read the terms and conditions and then click the link underneath. 

I must impress, though, that on the Forum we actively discourage any abusive or aggressive posts and anyone whose posting is considered to be offensive in any way will be contacted to remove or edit it.  As a last resort you would have your membership of the forum removed.  This policy is working very well indeed to date and it’s a friendly place to go for private chat.

Please, if you apply to join, would you give me as much detail about yourself as you are able?  The reason for this is that the Forum is only for those who are infected and affected by contaminated blood and blood products and I need to be as sure as I can be that requests are genuine before I grant access.  Thank you.

Sue

Terms & Conditions:

The taintedblood private forum has been set up as a facility for those people who, having visited the TaintedBlood website, think they would benefit from having a forum where they can engage in discussions that are not in the public domain.  Please note that although anyone can join, their membership has to be approved by the owners - i.e. the TaintedBlood committee.  Membership can be revoked at any time, with no warning, if the committee feels that anyone is behaving within the forum in a way that is likely to hurt, upset or cause offence to another member.  Please note that this forum is independent of the TaintedBlood website; however we still demand that members behave and post responsibly.  Please also be aware that if you take part in a discussion on the forum your name and e-mail address will be visible to other members.

http://taintedbloodprivateforum.groups.live.com/?sa=28531900

HI Sue just a little about me my name is David Pritchard i contracted hep c in 1984 after having alot of transfusions as i had hereditary spheroshtosis a blood enzyme problem and later that year my spleen was removed and more blood and factor8 i lost 2 little ones  hailey who would of been 24 today she was 3days old in1986 and Ben in 1994 who was 12 days old they were premeture i have asked the question was it because i had hepc nobody medical will answer i had alot of illness over the past20yrs and as my doctor said we know why now.I Was diagnosed in late 2005 as me and my second wife were going to have ivf treatment and had to have blood tests it was deverstating for everyone.AFTER my biopsy and tests at the Royal LIVERPOOLHOSPITAL I told i had the worst genotpe 1 and had to be treated within 18mths i undertook the 11mth dual treatment the side effects mademe ill and i spent time in hospital couldnt work as iwas selfemployed gardener my wife cared for me at the end of treatment it affectedmy right knee that it was replaced 11mths ago i am 50 with a young family lost myability to work i got the exgratia payment no questions asked once they saw my medical records with all the evidence.NO body will give me any insurance or work due to my past .I CAME TO LONDON and metpeople like u it was humbling to see the humility and courage of the H.S.COMMUNITY.My MP couldnt sign the edm but has written to the PM she believes we all have been wronged i have had the same replies from Gillian Merron as everyone else,i do have a faith and do believe justice will happen one day ,may i thank you and everyone else for your courage humility and selflessness GOD BLESS EVERYONE Thank you and may we keep on going for those who are not here to do so .DaveP

Actually, Dave, I felt utterly humbled when I read your posting.  You have been through such a terrible time and yet you still want to say nice things to us!  Thank you so much, but there's no need, honestly.  We do it because we all believe in right and wrong and because we want to see an end to this - and probably because we're all a bit pig-headed and bloody-minded as well!  I was so very sorry to hear about what happened to your babies but I honestly have never heard of that sort of thing being put down to Hep C.  Regardless of that, though, don't blame yourself.  You - like everyone else - have done nothing wrong.  Rather, you have been wronged and we intend proving it.  Take care, and thank you.

Sue

I had a cot death in 1980 and my daughter would have had her birthday on 19 March but died at 2 months old. I asked a leading expert whether my hep C (which I contracted from a transfusion in 1974) might have contributed to the cause of Sudden Infant Death Syndrome and he said that it was for patients to tell doctors about this so they can investigate - or words to that effect. I remember thinking that this type of research and statistical analysis - if it ever happened - would be years off. It is too sad a research topic for me to follow up - so I was interested in your post Dave.

annie

Thanks Sue And Annie for your commentsand words of comfort,i really believe in my heart things will work out for all of us all,time is not on everyones side but i know with Gods strength and courage the fight will go on and the Goverment know it thanks to everyone unified in this JUST CAUSE.

 Access to the Private Forum

We have recently had a large number of requests to join the Forum - mainly from people who wish to access the questionnaire.  The usual procedure here is that people click the link to join, fill in some details, then we get a message alerting us to the requests.  We always check through the information given to the very best of our ability so that the only people using the private area are those with a genuine entitlement - i.e. those infected and closely affected by contaminated blood and blood products (usually spouses, partners and childre, etc).  Obviously we already know many of you, which makes it easier sometimes!

At the moment there are two outstanding requests which we are unable to process because the people concerned are not giving full details.  Please would those two contact me by e-mail and I will send you a direct invitation?  (This can also be done if for some reason you have a technical problem getting in). 

There is a limit to the number of words you can put so if it helps e-mail me instead.  However, it's not enough just to say that you would like to access the questionnaire or want to join the Forum.  I'm sorry for appearing picky but I have to be in order to keep it as secure as possible.

Sue 

suethreakall@hotmail.co.uk

Here are the Forum details again, along with the link:

The taintedblood private forum has been set up as a facility for those people who, having visited the TaintedBlood website, think they would benefit from having a forum where they can engage in discussions that are not in the public domain.  Please note that although anyone can join, their membership has to be approved by the owners - i.e. the TaintedBlood committee.  Membership can be revoked at any time, with no warning, if the committee feels that anyone is behaving within the forum in a way that is likely to hurt, upset or cause offence to another member.  Please note that this forum is independent of the TaintedBlood website; however we still demand that members behave and post responsibly.  Please also be aware that if you take part in a discussion on the forum your name and e-mail address will be visible to other members.

http://taintedbloodprivateforum.groups.live.com/?sa=28531900

Please note:  There are still two outstanding requests to join the Forum.  It's not that I dont want to grant you access; I just need a few more details about who you are!  Please e-mail me.

Sue

suethreakall@hotmail.co.uk

Hi all,

There seems to be a problem getting on to the Private Forum, and getting the discussion pages to load.

I have had these problems from time to time and it is very frustrating.  At the moment, we don't know what is causing it.

My normal solution is to keep clicking and reclicking the link a couple of times really fast and hope that the forum loads and that the discussion pages load too.  I don't know if this solution will work or if it's a fluke, but a couple of rapid succession clicks tends to get me through.

There could be something wrong with the software... or the load on the internet server for the forum...

Yes, I've had problems too.  Another way that sometimes works is if you can open up the main link, click on a discussion title - once you're in it seems ok.

Sue

Ive been having the same problem for a while now..I kept intending to post asking if others were having the same problem vut i was beaten to it.

I wonder if its got a bit overloaded? After all i dont know how much free space you are allowed for these things

CVould the committee consider pruning it back a bit..maybe delete old threads etc?

Nick

I'll take some advice from a man who knows these things (RICHARD!!!!!!) and get back to you all about it.  If Nick is right them I'll take off a load of old threads and save them.

Sue

I suggest as a guideline Sue, delete any thread unused for six months or more. When that's done and if it works then make that a forum maintenance rule.

I do think actually that the TB blog could do with tidying up as well..Richard did mention this to me a while ago..Am sure he would be willing to help. It has become a bit cluttered.

Nick

As far as the Tb blog goes, I know that Andy 'spring-cleans' from time to time.  I have started archiving some of the older, bigger, Forum discussions but it may take a day or two to see if it has made any difference.

Please note:  We never delete anything.  Sometimes threads/comments are hidden or archived but we hope to keep a full record.

Sue

Hi All...

I dont have problems as such logging on to "Private Forum" its just I have to first sign in to "Windows Live Messenger" then click on "Private Forum" in groups and then I have to sign into "Live login"  to access the forum and my email.. Anyone know why... 

Lesley

Hi Lesley,

It's because the Forum is a Windows Live application - i.e. Hotmail - and so you have to be logged in to that first.

Sue

 Thanks for that Sue....

Lesley

The Forum does seem to be working better now - faster...

Dear all,

We're really sorry that we have just had to decline a request to join the Private Forum made by a lady who failed to provide any information except her name.  Please if you are reading this, would you mind reapplying with a sentence giving a little information. Thanks.

 I'm really sorry but I have to ignore the latest request to join the Forum.  Please, please, please, if you want to join I need more detail than just your name.  I need to know something about how you are connected to the contaminated blood community.

Please would those who have not yet had an acknowledgement to a Forum request, e-mail me and I'll sort it out?  Thank you.

Sue

Dear all I have received a message from my mother (Gloria) which she would like me to post on here to encourage everyone in our campaign.  She doesn't have the internet so I am going to post it here for her.

These are my mother's exact words:

"I would like to encourage all you haemophiliacs, family members and affected others who have been campaigning so hard. I know you must be feeling very let down at the moment but I would like to say to you, not to give up, but to persist. I felt that the debate was an honest and open one and to have this recognition after so long is a milestone in itself.

We must keep bothering the government until they see to it that we get justice. It needs to be that we will wear them out with our continuous coming. They cannot keep putting us off, They will want to give us justice and quickly.

By our continuous coming with our complaint (not in an aggressive way I might say) they will listen to us and act on our behalf. I know that many of you are saddened by the result but I would say to you if we continue doing things with a right motive because we have right and truth on our side we will prevail. Will not the government see to it that justice will be granted on our behalf?  Keep pressing on."

A lovely message from your Mum Wander...Pass on our thanks to her

Nick

Thank her from me as well; that's a great message.  I'm sure she's right that if we conntinue to do it all with the right motives then we'll win through in the end.  I especially like this bit:

'...we will wear them out with our continuous coming'

Oh, we will...we will!

Sue

Thank you everyone. I will be sure to pass on your thanks and appreciation.

FORUM

Please could 'AA' e-mail me with some fuller details regarding his application for the Forum?  Thank you.

Sue

My mum died 16 years ago and my dad 30, and I know that they would have been so angry if they knew what the concentrates that had been administered over the years had done not only to their only daughter, but to the whole haemophiliac community. My mum, was a very tenacious person and she would have been writing and protesting about the scandal which has unfolded, indeed she would have been incredulous at the lies and subterfuge that has emerged over the years. I was touched by Wanders'mums letter, and send my thanks to her for taking the time to think of ALL of us.

Would the three people who have recently applied to join the Private Forum please e-mails me?  Their initials are PV, LS and DR.  Thank you.

Sue

suethreakall@hotmail.co.uk

Revised Forum Rules.  Please see Private Forum for details.

The TaintedBlood Private Forum has been set up as a facility for people directly infected or affected by contaminated blood and blood products who, having visited the TaintedBlood website, think they would benefit from having a forum where they can engage in discussions that are not in the public domain.  Although anyone can join, their membership must firstly be approved by the TaintedBlood committee.  Membership can be revoked at any time without warning, if the committee feels that anyone is behaving within the forum in a way that is likely to hurt, upset or cause offence to another member.  Please note that the private forum is independent of the TaintedBlood website, however we still demand that members behave and post responsibly. Be aware that if you take part in a discussion on the forum, your name and email address will be visible to all other members.

Access to, or reproduction of, forum content by non-forum members is strictly prohibited whether by verbal, written or electronic means, without the explicit permission of all participants and the TaintedBlood committee.

This includes, but not exclusively, reproduction of  private forum content  on any websites, forums, social networking sites, newsgroups, chat rooms or by voice messaging / telephone, email, SMS and using written correspondence etc.

We ask all forum members to respect our intention to provide a safe, private and confidential framework for discussions of highly personal and sensitive issues. This is why discussion content and identities of forum members - in particular - should not be divulged to anyone who is not a forum member. Breaches of confidentiality will be viewed extremely seriously by the committee and if proven, will result in immediate and permanent removal from the forum. TaintedBlood also reserve the right to take legal action against the perpetrator(s) for breach of trust and/or breach of confidence.

The views that people express are their own individual views and do not necessarily reflect the views of TaintedBlood.  People who choose to post and engage in discussions do so voluntarily and at their own risk.  If people choose to view and/or take part in forum discussions, this will be interpreted by the committee as an agreement by that person to adhere to the forum rules.
Any decision made by the committee will be considered final.  You may appeal by email a decision to be excluded from the forum, on the understanding that once that appeal has been made, no further correspondence will be entered into other than a review of the original decision at the committee’s discretion.

Sue Threakall
Revised on 9th March 2012

Just to say that, in their infinite wisdom, Windows Live have removed the discussions feature from their groups!  It defeats me why they should want to do this, but please be assured that we are currently working on another option for private chat which should hopefully work out better.  In the meantime please hang on in there!

Sue