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Thread: Itís new year and things just occur to me at this time of year...

  1. #1

    Itís new year and things just occur to me at this time of year...

    Hi forum readers.

    Having had MND for nearly 6 years, I thought I would post the following. Sadly, our community is receiving and losing members daily and I wanted to re-post about my blog, which new members might find useful, but above all enjoy. It is not a typical terminal illness blog. But you judge for yourselves.

    When I was diagnosed, I starting writing the blog (Onein300.com) mainly to promote how common MND is. It has a lifetime risk of 1 in 300 for the whole population, and that means some brutal things:

    1) 200,000 of the current U.K. population will develop MND in their lives.
    2) 3 children in each and every school today (average school size 1000) will develop MND in their lives!

    Rare is not a word I would attach to MND, considering it’s prognosis.

    I call on everyone associated to always use the above statistics, and in particular the 1 in 300 in any discussions regarding MND. I would like to see the overused statistic of 5000 living with MND in the UK not spoken about, unless it is highly qualified with - “only 5000 are alive at any one time because MND has such a bad prognosis” - You only have to compare with a disease with a similar lifetime risk, eg MS - (Multiple Sclerosis) for which about 200,000 are alive at any one time!

    But secondly forum readers, my blog is not your typical terminal disease blog, it is largely fun.

    And finally, but most importantly, as a scientist myself I have always been interested in research. Over the time I have been diagnosed I have seen many stories come and go, false hope, etc etc. But also the same research subjects come up repeatedly, eg stem cell therapies.

    The good news is we are making real progress with research. However, science is hard, and we need to be realistic and vigilant.

    I have seen some quite serious criticism of MND associations globally for perhaps not investing in x and y. It makes me sad, as the associations including our Marvellous MNDA are wonderful and have been working for many years tirelessly. They face real challenges, especially with funding and public awareness compared to cancer etc.

    On my blog I have recently completed a series of “The Devil is in the Detail” research posts that really were a response to many things and comments I had seen on social media. These writings attempt to detail, in I hope readable articles, the complexities of research and some particular issues and concerns that come up all the time. It’s the sort of thing that cannot be answered in short messages on social media. It requires detail.

    https://onein300.com/the-devil-is-in-the-detail/

    I also write general research articles and typically every couple of months.

    https://onein300.com/research/

    Have a great 2020 all, despite all our challenges, and let’s make awareness even greater!

    Lee
    Last edited by Onein300; 6th January 2020 at 12:01.

  2. #2
    Thanks for this and your posts throughout the year, Lee, and especially your blog. It’s good to see constructive comments about the fiendishly difficult research being undertaken into MND, which I’m sure will eventually benefit future sufferers.

    And you always make me smile!

    Doug

  3. #3
    Doug we are close, so close. But it needs constant attention.

    New blog post being written as we speak,

  4. #4
    Thanks again Lee. Great perspective as always. I’ve re-read your Jan 6th post and realised I slightly disagree with you on one small point – about ignorant people slagging of MND researchers and charitable organisations. It doesn’t make me sad, it makes me mad! Always has done.

    I meet these people. I’m one of their guinea pigs. For an extra nibble of lettuce they take me out of my cage at times, jab needles in me and trap me in burrows in noisy machines for hours.

    Sitting with them afterwards, listening as they discuss their projects and their data, their passion for what they do shines out. I’ve worked at the cutting edge of research in a completely different field and I know what brilliance and commitment look like. One young woman said to me once, “If I’d wanted research to be easy, I’d have chosen something simple…..like cancer!”

    I’m not one for new year resolutions, but I’ve decided that in 2020, with time running out, I’m not going to just internalize my anger at such stupidity any longer. Naysayers beware!

    Looking forward to reading your next blog, as always

    Doug

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