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    For the attention of Forum Admin.

    Dear Forum Admin,

    Please will you help me understand why a post is still online, despite it clearly breaking Forum rules. The post contained lies about me, which naturally caused great distress and upset to me and is continuing to do so because I have received no feedback from you whatsoever.

    14.47 on Tuesday 3rd September: I reported the post for the first time using the report button.
    16.59 on Tuesday 3rd September: I asked in a PM to Admin_MND why the defamatory post was still up.
    14.15 on Wednesday 4th September: I reported the same post again due to lack of response to me and my ongoing distress.
    15.55 on Wednesday 4th September: I emailed [email protected] (as advised to on the Rules and Privacy page) as I had no response from Forum Admin.
    Thursday 5th September: I waited in the hope that someone in Admin would contact me, nobody did.

    Days later, I’ve had no reply, feedback or any response to any of my attempts to contact you, hence this post, which I sincerely hope you answer.

    If you’re in any doubt which post which has caused me so much stress and upset, it’s this one:

    Originally posted by originalthought View Post
    I am very upset to read Ellie`s posting from Dublin and the stress she has suffered as it is not available to her. This distress is certainly not intentional. Users of the drug RCH4 only wish to contact others using it and we only wish to exchange our experience of it.

    Some 2 years back, Ellie complained about the cartoons on the RCH4 charity website so she knew about the drug at that time.
    I have written to the charity about this and have just received the following reply.
    We have never had any enquiry from Dublin. The lady has never contacted us. If she had a diagnosis and doctor`s permission, she would have been accepted at that time.

    When the charity had the funds, everyone asking for help was accepted. Please Ellie, do not take this thread out of context. We are only trying to exchange information good or bad, we are certainly not trying to taunt anyone.

    Thank you
    I have NEVER been in contact with the website to which the Forum Member has referred. That is a complete lie.
    The Forum Member also contacted a 3rd party using my PERSONAL DETAILS and asked about me.
    How are those breaches of the Rules permitted? (8.4.1 and 8.4.3)

    Please note: this has nothing to do with the general controversy re the RCH4 Thread, nor with my 30th August post on that thread. It is just this individual defamatory post.

    You (the MNDA) say it’s important to you that the Forum is a safe environment - it falls short of this for me.

    Please, please will someone have the decency to finally remove that offensive post, or at least reply to my various attempts to contact you. I should not have to endure this ongoing distress and upset, my life is hard enough as it is.

    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    Hi Forum Admin;

    I also reported one of Ellie's posts, to highlight the distress that Ellie feels. Also asking for some of the offending posts were modified or deleted and the whole thread frozen because it all seems so unbelievable.

    I too have not heard anything back from you.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      Dear Forum Members,

      Forum Admin replied to me today (via PM)

      I want to update any interested readers on their decisions, as it may impact other Forum Members on what is permissible under the published Forum 'Rules and Privacy Policy'.

      I am not doing this to debate the rights and wrongs of any decisions which have been made - this is for information purposes only.

      I reported a post which contained a lie about me - I have never made contact with that website.

      Originally posted by originalthought View Post
      Some 2 years back, Ellie complained about thecartoons on the RCH4 charity website
      I reported the post as, to me, it broke Forum Rules, namely:

      8.4Contributions must not:

      8.4.1 contain any material which is defamatory, libellous obscene, offensive, vulgar, sexually orientated, hateful or inflammatory;

      8.4.3 be threatening, abusive or invade another's privacy, or cause annoyance, inconvenience or needless anxiety;

      8.4.4 violate good morals and practice;

      ​However, Forum Admin feels the comment (lie) does not break Forum rules.

      Also, please be very careful what information you put on the Forum which others can see, as it can be used by anyone to contact a 3rd party and ask questions about you - I have been told this does not breach any Forum rules. To this end, I have unfortunately removed any personal information that could be used to help genuine Forum Members, because it was inappropriately used by one Forum Member.

      Take care.

      Love Ellie.

      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


        I am just really sad that Ellie, who uses this forum, to help people with MND feels this way.

        Despite having lived with the huge life changing difficulties of MND for many years she is always there to offer her considerable expertise and knowledge. There is emotional support and humour no matter how small the problem and I cannot be the only one that finds this positivity inspirational.

        Thank you for the advice about confidentiality, Ellie. Like most of us I am a private person and I thought this was a safe place to post our feelings and occasional fears.

        Take care
        Love Debbie x


          Surely it is obvious that 8.4.3 is breached as Ellie has been caused needless anxiety etc


            Good morning

            I thought it was against the rules to copy information about members of it outside the forum without permission?

            Because this is what happened to me when you banned Doblett the 1st time?

            And in that case, if there is any value in this RCH4 stuff, his copying of my comments here to them meant I had no chance of getting whatever it was they were providing.

            So it looks like I need to go back through my posts and check what I would not like posted outside this forum and delete it?

            It seems Admin has let him back in and he is doing just the same again in relation to the same subject



            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

            "Things turn out the best for people who make the best of the way things turn out"


              Hello all,

              We have posted a response on the RHC4 thread, which you can find here.

              Many thanks,

              Forum admin,
              Our working hours are Monday to Friday 8:30am until 5pm