Controversy here

I am glad that someone has weighed in again on the Trehalose issue. Well either its great or its not. Ms. Millman is entitled to speak her mind but so is the person who raised this issue. Perhaps Ataxia UK can find someone reputable who may have an opinion that many here might want to hear. Why all the silence??

25 Replies

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  • Sue Millman is very well qualified for a difficult job and we are so lucky and privileged to have her.

    It was a very difficult thing that she did. I do think that since she is representing us and so many of us love the freedom to talking on this forum perhaps she could reconsider her actions.

    The subject was last mentioned officially here 16 days ago, which is rather a long time and it has been brought up since several times. I understand that she was deeply offended and hurt but we all make mistakes and so many of us believe his intentions were good it would be a real shame to not have another voice on matters?

  • I agree with you. Bottom line is what counts. Good manners helps.

  • I just want to know what more needs to be done to make this treatment available. From what I've read it's proven safe and effective! 😣😤

  • Well, I'm not sure if it was an oversight or if I am being permitted to return, but I will take this opportunity to try my first returning post. This is Joe Peck, aka 2Sunny. I would like to begin by saying that I deserved to be banned because my slew of posts which were deleted were overly personal and hurtful. I apologize to Sue Millman from the bottom of my heart. I allowed my emotions to get the best of me for a moment, and in so doing hurt a fellow human which is anathema to my person. Also, I would like to say that Sue was correct. My initial post was framed in such a way that I was clearly advocating that others try what I was trying with my family. That was not my intention. I should have shared my research and my experience without intimating that it was a "treatment" that others should try. In the future I will endeavor to first remain dispassionate when questioned and second to simply share without bias information that I uncover.

    To all those who spoke out on my behalf . . . thank you. It means more to me than words can express that you believed my intentions were good and believed I offered some value to all of us who suffer from ataxia.

    I apologize to AtaxiaUK in general and to Sue personally and hope this puts the issue to rest.

    In the vein of good will I thought I would start with this latest of drugs being researched. It is known as BHV-4157. I believe it has been mentioned here, but I though posting a link to the clinical trial might be worthwhile. Perhaps there might be a way to have someone's neurologist see if the trials can't be expanded out of country:

    ncbi.nlm.nih.gov/pubmed/273...

  • I think the issue is behind us. You are frustrated. She's hurt. you apologized. She chose not to reply. The End. It's good to know that someone (Anyone) is doing research. My neurologists (very conservative) seems to pooh pooh all my suggestions nevertheless I sent him/her the top of this article. No answer yet.

  • Hi Jo, I'm so happy that you are back. Thank you for your magnanimous approach. I generally found your posts and replies so hopeful and positive so it's good to see you here again.

    Thanks for sharing links and research with us.

    All the best,

    X

  • Well I am speechless!

    What a magnanimous and detailed, well thought out and intelligent apology.

    I am so glad to have you back and your words have both resonated and humbled me. Brilliant on so many levels

    You see!

    we all knew what a man of integrity you were and that you had our best interests at heart!

    . We knew it!

    And we were right! Your post demonstrates that perfectly.

    Well done you and respect big time. If you feel any ripples of good vibes, and that is because they are being sent your way as a result of this that truly amazing post.

    So glad to have you back vindicated and forgiven

    and I hope that Sue feels better too.

    I am sorry for spitting my dummy out too .

    Really, that was amazing and I hope that you now consider setting up your own blog so that the rest of the world can discover your particular brand of integrity and genius and Sherlock like research abilities.

    Everyone is going to be delighted and despite the odds, a happy ending occurred

  • We're in this mess together.

  • Well said

    And we all seem to be really brave and really special. Every cloud…

  • Well said :)

    We really are all in this together. And everybody, in their own way, is trying to help.

  • Welcome back!

  • So happy and thank you Sue and all at Ataxia UK XXXX

  • Really?What did Sue say to you? And what was thereaction of Ataxia UK? Glad u r glad N

  • Jolly well said

    Sue we love you too x

  • Have no idea what u r talking about but it all sounds good so be well aind lets share good news, N (This might be a dupe)

  • Dear All,

    My apologies for not responding more speedily to the posts above. Unfortunately other duties at Ataxia UK had to take priority on Friday.

    I would like to add a final contribution on this episode which I hope will bring it to a close.

    Firstly, some background. Some years ago Ataxia UK had a forum on our old website which had largely fallen into disuse. I was convinced that we needed to offer a forum to Friends, and that it could be more successful than the existing one. Then I came across HealthUnlocked which was just launching its services. Surprisingly to me, a majority of the Trustees of Ataxia UK (almost all of whom are affected by ataxia either as patients or family) were resistant to the idea that we should have a HealthUnlocked forum and it took some months to get it agreed.

    Foremost among the Board’s concerns were

    1)that a site that was successful would produce more contributors, many of whom we may not know, and that this would increase the risk of abusive posts.

    2)The fear that a successful forum would end up carrying inaccurate medical information which was dangerous or misleading.

    I only managed to get the proposal agreed with the support of HarryB (Dr Harriet Bonney, then a Trustee, but now Chairman of the Trustees) whose offer to moderate the site was reassuring to Trustees as she is a qualified medical doctor. This, coupled with our promise that the site would not carry any scientifically unproven medical advice or abuse, was sufficient for us to be allowed to launch our Ataxia HealthUnlocked site in 2012.

    The proof of Harriet and my belief that the site would be beneficial to people affected by ataxia comes from the statistics on its use:

    It has 1,613 members (no doubt many more people have viewed the site) and generally an average of 450 active members.

    Since it's inception there have been over 14,000 posts; and nearly 32,000 page views in February 2017 alone – whereas the old forum had a total of 4,400 posts in 4 years.

    I hope that this background explains my reaction to the ‘Trehalose debate’!

    It contained both of the elements that the Board were most concerned about: implicit and explicit advice that people should use a substance that isn’t approved for use, and intemperate comments bordering on abuse. Fortunately, the abuse seemed aimed at me, and although I didn’t find it pleasant, as I was acting in my professional role, I was able to distance myself from it. However, I was concerned that if this became acceptable behaviour, it wouldn’t stop at me, and if other members of the site received similar, they would find it distressing.

    This meant that on the grounds of content and behaviour, I felt we had no alternative but to take serious action; I discussed it with Harriet and we decided we had to restrict the use of the site by 2Sunny/Joe Peck.

    Yesterday I received a private message from Joe apologising for the comments he had made to me and acknowledging that in earlier posts he had stepped beyond recounting his family experience and the evidence he had found for trehalose, and had been advocating to others that they should use it and saying he would not repeat his previous behaviour. Both his message to me and his post from JP66 are most welcome, and I have not restricted him in his identity of JP66.

    As I said in a previous post, I do understand the frustration at having to wait for proven treatments, and I realise that confronted with anecdotal or other evidence, of the efficacy of an ‘alternative’ medicine or supplement, which is not an approved treatment; people are going to want to consider whether it’s an option they wish to take. But my position has to be that I adhere to the rules that the Trustees have set me, and ensure that this site isn’t compromised.

    I hope that with this post, this episode has been brought to a close. I’m sure it hasn’t been very pleasant for any of those involved. Thank you for the kind things that have been said about my leadership of Ataxia UK and the support that has been offered to me. All I can say is that I’m very committed to you all, and to the fight to get treatments and cures for the pernicious conditions which go under the name of ‘the ataxias’. It is a fight that collectively, over time, we can win. No doubt it will involve a number of ups and downs; but it’s certain we are more likely to win it and have a better time along the way, if we remain united, supportive and kind to each other.

    Sue

  • Thanx 4 your help always and be well.

    Best N

  • Thank you Sue. As you have said in your most recent post you have discussed this issue with me throughout and I agree with and support everything you have said.

    To all, I am sorry to have been quiet in this matter but I am dealing with family illness. Through my discussions with Sue my views and opinions, both as Chairman of Ataxia UK and someone who has ataxia, have been accurately represented.

    I am delighted this matter has come to a close.

    Best wishes

    Harriet

  • Thank you Sue.

    X

  • Thank you so much for taking the time to explain all of that to us. Totally understand now.

    You go girl, that was amazing.

    You are the mastermind behind the whole plan and have been instrumental in creating this community!

    Not only that, he went the extra mile to ensure its existence.

    Respect to you.

    Again, I would like to extend magical sparkly good vibes to you.

    You are a true superstar Sue, as your post demonstrates.

    And we all know you a little bit better now as well.

    Your legendary status has been sealed.

    "We are all very brave and very special here"

    I rest my case.

  • Thank you so much. I'm not sure I'm worthy of all this praise - but I'll do my best to live up to it!

  • Ditto harriet!

  • Thank you!

  • Definitely and things are never easy or straight forward x

  • You already have lady

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