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Type: Posts; User: Doug Carpenter

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    Hi Barry Yes, it looked quite useful didn't...

    Hi Barry

    Yes, it looked quite useful didn't it. Good to see you by the way.

    By coincidence, there is a double page spread in today's Guardian magazine (paid for content - John Lewis) about eye...
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    AndyM and Skyvano If you intend to continue to...

    AndyM and Skyvano

    If you intend to continue to use this forum, which is devoted to a disease that neither of you seem to have, would you please communicate with each other by private message.
    ...
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    Thanks Jonboy53. I'm sure looking after our...

    Thanks Jonboy53.

    I'm sure looking after our digestive system is important. Is it possible for you to summarise (or link to) the principles of the regime you follow?

    Doug
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    This was posted recently: Interesting MND...

    This was posted recently:

    Interesting MND research blog about the gut microbiome:

    https://mndresearch.blog/2019/05/31/...r-in-our-guts/

    including a TedMed talk by Dr John F Cryan of...
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    Fantastic! Well done Maz. I will track down...

    Fantastic!

    Well done Maz.

    I will track down the page and raid the piggy bank.

    Good luck!

    Doug
  6. Thanks Lee. A stimulating read as always. ...

    Thanks Lee.

    A stimulating read as always.

    As I understand it, to reduce the problem of denial of treatment, in some trials there is a tendency to reduce the placebo/drug ratio from 50/50 to one...
  7. Thread: Hiya

    by Doug Carpenter
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    Welcome Maz! Well done and thank you for...

    Welcome Maz!

    Well done and thank you for taking that brave step of saying Hiya.

    Now save all your courage for yourself. It’s not needed here. This is place to talk, to ask, to read, to rant, to...
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    Tummy troubles

    Interesting MND research blog about the gut microbiome:

    https://mndresearch.blog/2019/05/31/microbiome-is-the-answer-in-our-guts/

    including a TedMed talk by Dr John F Cryan of University...
  9. FDA approves gene therapy drug for pediatric SMA

    This is NOT directly relevant to MND pharmacologically, but it shows that advances are being made elsewhere in gene therapy. But also the cost - $425,000 per year for five years!
    ...
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    Hi Polly Thanks for the update on your...

    Hi Polly

    Thanks for the update on your husband’s situation. Big hug!

    I can only echo what’s been said already. Never worry about posting about the dark times. That’s one important role this...
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    May I chip in - A different Stewart: ...

    May I chip in -

    A different Stewart:

    https://www.youtube.com/watch?v=XAKyr10ovqY

    Doug
  12. ALSFRS-R limitations

    Hi Dis1960

    Yes, youre right. The ALSFRS-R is a rather crude metric. A bit like using the FTSE-100 as a measure of the health of the whole economy.

    Monitoring ones own ALSRFS-R, i.e....
  13. Quite right, Ellie. I’m sure there are some...

    Quite right, Ellie.

    I’m sure there are some mechanisms that will be found to be common across several types of MND – and possibly other neurodegenerative diseases. But as far as initial triggers...
  14. Biomarkers

    Another very comprehensive review of biomarkers - including imaging studies - has recently been published by the SITraN team at Sheffield.
    ...
  15. Biomarkers

    Hi Andy

    Yes, it can be difficult for researchers to assemble cohorts for trials see my reply to Dina above. My view is we should help them to help maybe not us but future generations of MND...
  16. Hi Dina You raise an important point. In my...

    Hi Dina

    You raise an important point.

    In my experience of the researchers at the MND clinic at the John Radcliffe Hospital in Oxford – yes, they are proactive. I was asked on diagnosis if I...
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    Many thanks John. That's extremely helpful...

    Many thanks John.

    That's extremely helpful information. I'm not sure how far down the line my friend is with her plans, but when I've got a clearer picture I'll probably want to pick your brains...
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    Many thanks Kayleigh! Quite a mine of...

    Many thanks Kayleigh!

    Quite a mine of information there. It would be good if anyone can comment on installations since 2016.

    I'm most grateful.

    Doug
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    Beam me up Scotty

    I would be very grateful, on behalf of a friend, for advice, experiences and comments on through floor lift makes and installers.

    Many thanks!

    Doug
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    Project MinE

    If youre unfamiliar with Project MinE (https://www.projectmine.com) this recent paper in EJHG gives a good overview. Unusually for Springer Nature, its open access so its easy to download the pdf....
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    Hi Lynne A more general study into C9orf72,...

    Hi Lynne

    A more general study into C9orf72, i.e. not a specific antisense drug trial, is recruiting in the UK now.

    I posted about it on April 6th. It’s the C9orf72 Cohort Study being led by...
  22. Thanks Andy. Two useful little videos. This...

    Thanks Andy.

    Two useful little videos.

    This problem of our very heterogeneous patient population and its relation to clinical trials was covered very well in the ALS Webinar on Tuesday that...
  23. Thanks for keeping the link to the Forum quite...

    Thanks for keeping the link to the Forum quite prominent.

    Doug
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    Hi Polly Welcome to this marvellous community....

    Hi Polly

    Welcome to this marvellous community. You'll understand I'm sure when I say I'm really sorry you've found us, but I hope the Forum will be a source of information and comfort - as it has...
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    Interesting webinar. Available for a month...

    Interesting webinar. Available for a month apparently.

    A good summary of current drug trials - and a realistic comment on Endaravone. I am more and more convinced that a treatment for some forms...
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