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Thread: Id thought Id post about my blog again...

  1. #21
    Forum Member Lynne K's Avatar
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    Thanks Lee, I read your research news post with much interest. I appreciate that you're open to ideas but healthily sceptical. What a fab question you asked the symposium and you got some excellent informative answers. Like the researcher I'm also a glass half full person and as I have the C9ORF72 gene fault I have reason to be hopeful going by what the she reported about trials involving people with gene variants. I hope that you can keep your research posts coming when there's anything to report. Lynne
    Last edited by Lynne K; 24th May 2019 at 16:18.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #22
    It’s time for my living with #mnd #als post. Today one of my serious research commentary posts with a “hum dinger” of a controversial title! Those affected by the disease I hope it’s a useful and interesting article, and those not affected, it should be damm good education! Enjoy!
    https://wp.me/p5hqWZ-2OQ

  3. #23
    Forum Member Gillette's Avatar
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    Thank you for an interesting blog post, Onein400.
    Dina


    Trying to keep positive, but not always managing.

  4. #24
    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 third/two thirds. As in the current MND genetic study.

    Doug

  5. #25
    Forum Member nunhead_man's Avatar
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    Hi Doug

    And thanks Lee

    Quote Originally Posted by Doug Carpenter View Post
    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 third/two thirds. As in the current MND genetic study.
    And also, two thirds in the REFALS study from which I have been excluded because the recommendation was I use a Nippy to deal with sleep apnoea and the start of my decline in breathing effectiveness plus a very odd ECG computer analysed trace which I suspect may be a complete mislead

    Best wishes

    Andy
    (vote for me as an MND trustee!)
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  6. #26
    Quote Originally Posted by Doug Carpenter View Post
    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 third/two thirds. As in the current MND genetic study.

    Doug
    Reduction of controls is fine as long as the power analysis (ie significance) is strong enough.

    You need controls, despite the immediate feeling of its not fair.

    But the reality is not having controls will slow down, or perhaps even stop a viable treatment being identified.

    So as a person with MND I am fine with that. Greater good and all that.

    But it has to,be on a drug by drug basis. Crossover trials where everyone gets a chance are viable for symptomatic drugs, but cause problems with disease altering drugs.

  7. #27
    Quote Originally Posted by nunhead_man View Post
    Hi Doug

    And thanks Lee



    And also, two thirds in the REFALS study from which I have been excluded because the recommendation was I use a Nippy to deal with sleep apnoea and the start of my decline in breathing effectiveness plus a very odd ECG computer analysed trace which I suspect may be a complete mislead

    Best wishes

    Andy
    (vote for me as an MND trustee!)
    Andy,

    Ok, but please tell me, will you challenge the status quo? You need to say yes, else my vote goes elsewhere! Actually I have 5 votes!! So you have a good chance anyway!!!

  8. #28
    Forum Member nunhead_man's Avatar
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    Good morning Lee,

    Quote Originally Posted by Onein400 View Post
    Ok, but please tell me, will you challenge the status quo?
    If you mean in relation to the REFALS study I did have a bit of a go at them because they were saying they were short of potential "victims", but there were not prepared to change their position about me - the range of loss of diaphragm function was between 90% remaining (which is where I am) and 60% - and I am no breath function expert, but I would have for anybody down at 60% level would need the overnight assistance with ventilation that I need for my sleep apnoea.

    If you mean in relation to the blind trials overall with someone on placebo then I certainly will in relation to at least two thirds of punters getting the real thing.

    However, your blog makes it clear that until there is more certainty about what is going on with MND such trials are the way forward?

    Quote Originally Posted by Onein400 View Post
    You need to say yes, else my vote goes elsewhere! Actually I have 5 votes!! So you have a good chance anyway!!!
    Yes, everybody has up to 5 votes as there are 5 places going spare - so thank you

    Warmly

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

  9. #29
    Quote Originally Posted by nunhead_man View Post
    Good morning Lee,



    If you mean in relation to the REFALS study I did have a bit of a go at them because they were saying they were short of potential "victims", but there were not prepared to change their position about me - the range of loss of diaphragm function was between 90% remaining (which is where I am) and 60% - and I am no breath function expert, but I would have for anybody down at 60% level would need the overnight assistance with ventilation that I need for my sleep apnoea.

    If you mean in relation to the blind trials overall with someone on placebo then I certainly will in relation to at least two thirds of punters getting the real thing.

    However, your blog makes it clear that until there is more certainty about what is going on with MND such trials are the way forward?



    Yes, everybody has up to 5 votes as there are 5 places going spare - so thank you

    Warmly

    Andy
    Andy,

    Sorry I misled you.

    I mean in your role as a future Trustee, if elected. Nothing to do with placebo trials. Placebos are vital, end of story.

    Will you solemnly agree to be challenging as part of the board? For example Dont accept the status quo on any subject if you wholeheartedly disagree with it?

    If so you will get my vote.

    Best wishes
    Lee

  10. #30
    Forum Member nunhead_man's Avatar
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    Hi Lee

    Sorry for delay in replying - I'm away without my trusty voice dication - and thanks for clarifying.

    Typing this on my lapdog when half way up a mountain in Andalucia at a yoga retreat with my Dru Yoga buddies - they really look after me.

    Quote Originally Posted by Onein400 View Post
    Will you solemnly agree to be challenging as part of the board? For example Dont accept the status quo on any subject if you wholeheartedly disagree with it?
    Oh yes I will challenge even if I partly disagree!

    Warmly

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm a 90% right arm, plus other bits including left shoulder

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