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MND Research the Hope and the Hype - Be informed but beware and trust the MNDA

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    MND Research the Hope and the Hype - Be informed but beware and trust the MNDA

    Hi everyone.

    Just the other day I was noticing that I have started to see new members come onto various forums about MND and it made me think.

    I have had MND for over 7 years now, and sadly see a lot of people come and ago.

    Some of you know that I write a blog:

    I started this some 5 years ago for many reasons. Primarily to highlight the fact that MND is not as rare as perceived. But also to have a bit of fun. Those long term readers will know I mostly write guff about life and I promise it is not at all depressing.

    But also I write very specific posts on the research, ongoing drug trials and treatment prospects.

    I realised that a lot of new people have joined this forum and may not know about my blog and they might find my writings on Research interesting but above all helpful. Why?

    Well I have seen the same subjects come up again and again with new members of our unfortunate club. Questions about treatments being discussed, questions about why research is slow, why drugs that appear effective in social media chats are not progressing or available etc....

    If you are interested take a read of my research page.

    This is my main research page. For those newly diagnosed you might consider bringing yourself up to speed with the good, the bad and the darn right ugly by reading this page and my subsequent posts…

    Has much changed in the last 7 years? No sadly, not much with regards to treatments with still only 1 worldwide solidly proven drug (Riluzole). However, a lot has happened and we are now closer than ever to treatments. But what do we need to be careful of when reading about our disease?

    During the coronavirus pandemic, there is so much complete rubbish spoken about the virus and prospective issues/research that it makes our disease misinformation now seem minor!

    However, we do suffer from the same false hope/mis-representation/anger with authorities etc. And of course we don’t have the media attention to help dissolve.

    I hope you enjoy.

    Even if you don’t like my research stuff, enjoy my frequent blog of guff!

    And if there is one message I would like to give all newly diagnosed people it is this.......

    Please trust the MNDA. If you have any questions regarding a treatment prospect please, please ask the mnda team, and in particular the research team led by Brian Dickie. They are our trusted source.

    Best wishes all

    Otherwise known as onein300!
    Last edited by Onein300; 28 May 2020, 11:18.