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Thread: UK Biobank reports research

  1. #1
    Forum Member nunhead_man's Avatar
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    UK Biobank reports research

    Good morning all

    For various reasons, we have been participating in the UK Biobank database collection process and this includes yesterday going to their Reading centre and having a multiplicity of scans and tests to help them with their research and adding more about us on their database.

    In the process we picked up the biobank imaging Centre newsletter issue number three, and there are two matters arising;

    1) the newsletter reports that "physical activity may play a role in the prevention of neuro degenerative diseases, researchers conclude"

    I have tweeted them to point out that there seems to be a non-statistically significant positive association between getting MND and lots of activity in a particular sporting enterprise - any comments team?

    2) The same newsletter mentions the possibility that "drugs that reduce cholesterol may also protect people against motor neurone disease... having discovered that higher levels of LDL cholesterol are linked to a greater risk of the disease. The scientists studied the genetics more than 330,000 UK biobank participants and 25 million other people."

    Again, any thoughts team

    Warmly
    Last edited by nunhead_man; 8th July 2019 at 13:36. Reason: clarity!
    Warmly


    Andy

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

  2. #2
    Forum Member Terry's Avatar
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    Hi Andy;

    It would appear that many very (maybe extremely) active people get Mnd, so I would consider it playing a part with some of us.

    Certain foods could well help reduce cholesterol as well as drugs. I believe that oats and coconut oil have a positive affect on cholesterol.

    We are recommend, especially if losing weight, to eat high fat foods which would have a negative effect on cholesterol.

    Just my thoughts.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Thanks Andy.

    You were right to tweet them. As a long-standing Biobank contributor, I’m very surprised.

    As you say, there is continuing anecdotal evidence that active people – military personnel, sports people, farmers and so on – attract a higher incidence of MND.

    I vaguely recall reading something about cholesterol levels and MND, but I’m not sure it was that way round. I’ll try to find it.

    When are the election results declared?

    Doug

  4. #4
    Andy

    I found what I remembered reading about cholesterol and MND – in an MNDA fact sheet about statins:

    https://dbsy278t81889.cloudfront.net.../K-Statins.pdf

    This is the relevant bit:

    MND and cholesterol Based on previous studies (Chio, 2009, Dupuis, 2008), people with MND with higher cholesterol levels were observed to have slower disease progression and increased survival. This should perhaps be taken into consideration since statins are designed to reduce cholesterol levels, but yet again, more evidence is required.

    However, as always with MND, the literature is confusing, not to say contradictory.

    “Cholesterol” is too generic a term anyway:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5234729/

    A paper by researchers in Swansea and Oxford:

    https://www.swansea.ac.uk/press-offi...nditionals.php

    file:///D:/My%20Documents/Health/MND/jlr.P071639%20full%20cholestrol%20paper.pdf

    suggests elevated cholesterol levels are associated with MND, while another paper suggests elevated cholesterol levels prolong survival:

    https://www.researchgate.net/publica...eral_Sclerosis

    Take your pick!

    In my view, the problem is partly one of distinguishing between correlation and causation.

    There may be very good reasons for an individual taking or not taking statins to control their cholesterol levels, but curing their MND is not one of them!

    Doug

  5. #5
    Forum Member nunhead_man's Avatar
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    Good afternoon

    Thank you for saying I should have posted this because my learning from this forum had suggested it was misleading.

    Perhaps an email to somebody other - the director, perhaps - is called for

    May I steal the information above for that purpose?

    Oh, and election results announced at the AGM on Saturday - which they are not live streaming this year for some reason best known to themselves/

    Warmly
    Warmly


    Andy

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

  6. #6
    Forum Member Barry52's Avatar
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    Andy,

    I look forward to meeting you on Saturday. I assume you will be there?

    The MNDA are no longer live streaming the conference due to cost and lack of use. I support this decision as the money can be better used elsewhere.

    Barry
    Iím going to do this even if it kills me!

  7. #7
    Forum Member nunhead_man's Avatar
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    Good morning Barry

    Yes, I will be there, although arriving quite late on Friday night as I have a rather complicated weekend - please make yourself known to me if you can

    Warmly
    Warmly


    Andy

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

  8. #8
    Forum Member Ellie's Avatar
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    Barry,

    Any idea if it'll be videoed and available to view afterwards?

    I get the live streaming attendance v cost issue - I am an avid attendee on MND-related live stream events, but unfortunately it's not unusual to have single digit numbers viewing...

    Hope it's worthwhile for you guys.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
    Andy,
    The physical exercise evidence is totally flimsy to say the least.

    Fit people definitely notice the disease earlier, as they know their bodies. Also fit people tender to not get killed by other diseases like heart disease and so end up being in the gene pool after and are more likely to get MND and other rare diseases.

    But also millions of people do a lot of lot of exercise. And there are not loads getting MND. There are no clusters in extreme sports, like marathon runners, so the sheer exercise is probably not a factor.

    It could be that some people, who just happen to do exercise are more genetically burdened and a simple metabolic process is kicked into action in some.

    I could envisage in the future some genetic genotypes being advised against exercise, rather like we have done with “sudden heart” failure genes.

    But on the whole I think it is not worth investing much time in.

    Re statins and cholesterol. There is nothing again in this worth getting excited by.

    Both of the subjects are potential red herrings as far as finding the solution goes.

    I don’t care what caused my MND, just about what could slow it or even stop it.

    So I believe all research should go into understanding the precise disease process and focusing on a step that can be stopped. This step could be caused by many things, and is it important what caused it, probably not. Just then stop it. If we had an obvious factor, like smoking for lung cancer, yes we could stop it.

    But we have nothing of any such power in MND risk. In fact the biggest risk element is being a man!! More men get MND. And interestingly the risk appears to have swayed a little less to men.

    I really have a downer on epidemiological studies that keep looking for environmental factors, as the search space is not only infinite it is over the whole of one’s life! An event could happen anytime after conception that causes the chain to be set in motion.

    Unless we monitored every second/every metabolic change in one’s body we will probably have to be lucky to hit upon the solution this way.

    Targeting the failed process is a bit better strategy.
    Last edited by Onein400; 11th July 2019 at 08:15.

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