Friday, 20 July 2018

How can we create a prevention study in MS? We need your help!

Many of you will have seen the previous post on Preventive Neurology and the new initiative we are setting up to work towards preventing MS. As many of the comments have identified, this is a difficult area to study. We have to find a way to start monitoring people before they develop the earliest signs of MS. 

                  


If you haven’t seen it, read the previous blog post on Preventive Neurology.

Family members of people with MS have an increased risk of developing MS compared to the general population. So any preventive study would involve looking at family members, including the children of people with MS. 

One of the first steps in our prevention study will be to follow family members in order to see who goes on to develop MS, and who doesn’t. This is likely to be something that is done online, rather than in person. We want to then be able to go back and look at the differences between those that do and don’t develop MS in the years prior to the first symptoms becoming apparent. 

People with MS are central to this study - without you we cannot make this work. We need you to be enthusiastic about the study, and willing involve your family. 

This is where we need your help. We need people with MS to help us to design this study. To do this, we are running an event for people with MS and their families, to come along and give us their thoughts and advice.

The event will run in the summer holidays, on Friday August 10th, in London. It will kick off with a Digesting Science event. If you haven’t been to one of these or heard of them, Digesting Science is a fun set of games and activities to teach children (aged 6-12) about the science behind MS. It was developed by the Barts-MS team, as well as teachers and parents with MS. You can come along to this event, where your kids will have lots of fun trying all the activities. You can find out more about Digesting Science on the Digesting Science Facebook page



After the event, we’ll be holding discussion groups to talk to you and your children about how you feel about a prevention study. We want to hear your ideas, and are particularly interested in any worries and/or concerns you may have about you, your children, and other family members taking part in a long-term study. We want to know what you think about this kind of study so that we can structure the study around what is important to you, and try to address concerns before the study starts. 

This will only work if we have a good number of families involved and engaged. 

Please come along to the event to find out more about the study to prevent MS. Email us to find out more and let us know if you are interested in attending. Coming along does not mean you are committed to taking part in the study. And if you can’t come, but you want to tell us your ideas or find out more, please contact us: preventMS@gmail.com.

And please tell any other families affected by MS; you could also share this post or tell your MS nurse or any part of your healthcare team, to spread the word.

By DrRuth

12 comments:

  1. hi dr ruth i took part in your study a few years ago where you were basically saying the same thing as above. it seems like you are wasting your time?

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    Replies
    1. Hi - firstly thanks for taking part in the study a few years ago. That study was really useful in terms of helping us to work out how to design this study, from a scientific point of view. It helped us to realise which factors are important, and show the most difference between people with MS, healthy siblings and controls. One of the other things that became clear as part of that study was that we need to look not only at siblings, but also at children. So definitely not a waste of time!

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    2. "and show the most difference between people with MS, healthy siblings and controls."

      (ii) whether CD8+ T-cell deficiency precedes the onset of MS and is present in healthy first-degree relatives of people with MS, as in the healthy relatives of people with Sj√∂gren’s syndrome (iii) whether sunlight deprivation and vitamin D deficiency aggravate the CD8+ T-cell deficiency, as previously postulated(iv)

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5292561/

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  2. I have a twin sibling. I have MS my twin sibling doesn't.
    I had rickets at 3/4. Sibling didn't
    I smoked heavily. Sibling didn't
    I was very promiscuous. Sibling wasn't


    It's clear to me how to prevent MS

    ReplyDelete
    Replies
    1. Thanks for your comment - yes vitamin D and smoking are 2 areas we are very interested in looking at as part of this study.

      Delete
    2. Third point implying I caught a virus.

      Delete
  3. I would like to participate but I can't, I'm in another continent.
    Those who can participate then sign up because studies like this are very important.

    ReplyDelete
    Replies
    1. thanks - if you would like to help me to think about how to set up this study via email then please drop me an email as I'm interested in hearing from as many people as possible - we need to set this study up correctly for people with MS! preventMS@gmail.com

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  4. You need to look at siblings and children, and at parents too.
    They're also first degree relatives.

    As a caretaker of a child with MS I learnt a lot about the disease, which helped with my own diagnosis. This isn't uncommon

    ReplyDelete
    Replies
    1. thanks for your comment - the plan is to look at as many people as possible (children, also siblings, cousins, parents...) - as you say we shouldn't limit the study. One issue that I'm exploring as part of the set up at the moment is thinking about children as enrolling them in studies like this is much trickier than adults enrolling themselves - as I'm sure you'll appreciate. We are all very (understandably, and correctly) protective of our children, but if a study like this is going to work then we need people with MS to be willing to take part with their kids. I hope that makes sense...

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  5. Antivirals may prevent Alz. disease, could it be the similar for MS?

    Alzheimer's risk 10 times lower with herpes medication

    The two groups were followed for almost a decade, between 2001 and 2010. In the herpes group, the risk of dementia was over 2.5 times higher than in the control group.

    Significantly, the study also revealed that aggressive antiviral treatment reduced the relative risk of dementia by 10 times.

    Prof. Lathe comments on these new findings, saying, "Not only is the magnitude of the antiviral effect remarkable, but also the fact that — despite the relatively brief duration and the timing of treatment — in most patients severely affected by HSV1 it appeared to prevent the long-term damage in [the] brain that results in Alzheimer's."

    ReplyDelete
    Replies
    1. forgot link:https://www.sciencedaily.com/releases/2018/07/180712100515.htm

      1991-2018..progress is pretty damn slow

      Professor Itzhaki said: "It was as long ago as 1991 when we discovered that, in many elderly people infected with HSV1, the virus is present also in the brain, and then in 1997 that it confers a strong risk of Alzheimer's disease in the brain of people who have a specific genetic factor.

      "In 2009, we went on to show that HSV DNA is inside amyloid plaques in Alzheimer's patients' brains.

      "We suggested that the virus in brain is reactivated by certain events such as stress, immunosuppression, and infection/inflammation elsewhere.

      "So we believe the cycle of HSV1 reactivation in the brain eventually causes Alzheimer's in at least some patients."

      Delete

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