Dr. Karen Lee's Blog https://drkarenlee.ca An Inside Look at MS Research Tue, 19 Sep 2017 09:13:23 +0000 en-US hourly 1 https://wordpress.org/?v=4.6.7 120353486 Why #BurgersToBeatMS is critical to advancing research in Canada https://drkarenlee.ca/why-burgers-to-beat-ms-is-critical-to-advancing-research-in-canada/ https://drkarenlee.ca/why-burgers-to-beat-ms-is-critical-to-advancing-research-in-canada/#respond Thu, 24 Aug 2017 14:51:15 +0000 https://drkarenlee.ca/?p=1620  

20900550_10155863739382494_8699766386079112798_oBurgers to Beat MS day raises funds to help improve the lives of Canadians living with multiple sclerosis. This fundraising campaign led the MS Society of Canada in partnership with A&W Food Services of Canada Inc has already raised over $9 million over the past 8 years, and this year A&W increased their donation to $2 from every Teen Burger® sold across the country on this day. Burgers to Beat MS creates an opportunity for people across the country to come together to support Canadian-led efforts to better understand MS and find a cure, while enjoying a delicious Teen Burger®.

The cause of MS is still a mystery and researchers continue to examine ways to prevent, diagnose and treat this highly unpredictable and often debilitating disease.  Support from A&W allows the MS Society to invest in innovative research, support international research collaborations, and translate discoveries from ideas to new clinical tools and treatments.

Here are some projects that would not be possible without the amazing fundraising efforts of A&W and other dedicated partners and volunteers of the MS Society:

OG_Profile_2017-2018_Kolind_3031Shannon Kolind from the University of British Columbia was awarded nearly $300,000 for her imaging research. A common tool used for the diagnosis and monitoring of MS is magnetic resonance imaging (MRI). Recently, MRI has been used to not only identify MS but track its progression. Researchers look at changes in brain volume using MRI to determine if progression is occurring, however this can take over a year to confirm and is not always accurate. Dr. Kolind’s research team wants to explore if the loss of myelin, the protective covering over nerve fibers, could be a better predictor of progression and thus could serve as a biomarker. Using imaging, Dr. Kolind plans to measure structural changes in myelin in the hopes of identifying individuals with MS who are at risk for progression, and reduce the time required for progressive MS trials.

GSRobertsonDr. George Robertson from Dalhousie University was awarded over $300,000 to examine whether nine drugs that are used to treat other diseases may have benefits for MS, specifically mobility. To achieve this, Dr. Robertson will administer these drugs to mice with an MS-like disease and observe their movement while they are using a treadmill. He will  perform a detailed analysis of gait parameters such as joint movement and ankle movement. The goal of this work is to develop a tool that can identify promising therapies that will improve mobility in individuals with MS.



Rotstein-DaliaDr. Dalia Rotstein from the University of Toronto was awarded over $150,000 to study rates of MS amongst immigrants to Canada to better understand why Canada is one of the highest risk regions for MS in the world. Immigrants are thought to be at lower risk for developing MS than people born in Canada, but their risk is still believed to be higher than that in their native countries. Dr. Rotstein’s work will lead to the creation of one of the largest and most diverse cohort of immigrants with MS. By studying this unique group of individuals, Dr. Rostein will inform the creation of tailoured health care strategies for immigrant populations with MS, while also providing important insights into risk factors for MS in general.

These are only a few of the many studies funded by the MS Society that are advancing our understanding and management of MS. Fundraising campaigns like Burgers to Beat MS are imperative to ensuring the success and of this work and creating a strong and talented network of MS researchers in Canada. I hope that all of you will grab a Teen Burger® today to continue supporting the advancement of MS research in Canada.

Leave a message on what research area is important to you.

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Hack4Health team Roze receives MS Society funding to develop new fatigue management resource https://drkarenlee.ca/hack4health-team-roze-receives-ms-society-funding-to-develop-new-fatigue-management-resource/ https://drkarenlee.ca/hack4health-team-roze-receives-ms-society-funding-to-develop-new-fatigue-management-resource/#respond Mon, 26 Jun 2017 12:48:35 +0000 https://drkarenlee.ca/?p=1603 Team Roze at Hack4Health 2.0. Pictured (left to right): Lisa Loiselle (Co-chair), Lori-Ann Williams, Marium Kirmani, Rui Su, Karla Boluk (Co-chair)

Team Roze at Hack4Health 2.0. Pictured (left to right): Lisa Loiselle (Co-chair), Lori-Ann Williams, Marium Kirmani, Rui Su, Karla Boluk (Co-chair)

I recently had the opportunity to interview Roze, a team of University of Waterloo students and the winners of last Fall’s annual Hack4Health competition hosted by the university. Hack4Health is a 36-hour innovation marathon bringing together students from multi-disciplinary fields working together to design a technology-based project on new wellness solutions for people living with multiple sclerosis and Alzheimer’s disease. Check out a previous blog post about the Hack4Health program and winners of the 2015 competition.

The members of team Roze – which include Lori-Ann Williams, Marium Kirmani, Rui Su and Tina Chan –bring experience from different areas: public health, pharmacy, software development and informatics. These talented ladies were excited about the opportunity to learn about MS and other neurodegenerative diseases as well as how they could contribute their skills of intersecting technology and health to make improvements in the quality of life for people living with MS. At Hack4Health, they pitched the idea of an app that promotes appropriate physical activity for women living with MS to help cope with and potentially reduce fatigue, one of the most common symptoms of MS.  As the winners of the competition, they were selected to work with a supervisor to further develop their project with the help of a $15,000 grant from the MS Society of Canada.

In my interview with team Roze, I learned more about what motivated them to participate in Hack4Health, their fatigue-based technology, and a bit about the members of the team themselves.

Tell me a little about yourself and what motivated you to participate in Hack4Health?

Tina: I am a master of science candidate at University of Waterloo School of Public Health and Health Systems. This was an event run by my faculty and I thought it was a good opportunity to learn about dementia, MS, and other neurodegenerative diseases. It also gave me an opportunity to work with a team of great people.

Rui: I am currently pursuing a doctor of pharmacy at the University of Waterloo. I worked in many community pharmacies as well as a cancer centre in Toronto. I am really passionate about health care as well as the intersection of technology and health care and how that can improve patient outcomes.

Marium: I just finished my bachelor of health sciences degree at the University of Waterloo with a specialization in health informatics. I participated in Hack4Health because it provides an environment to find practical solutions to health-related problems.

Lori-Ann: I am currently working full time in downtown Toronto for a company that develops software for the life sciences industry. The reason why I did Hack4Health was because I like how it combines technology and health. Being at the hackathon, I could easily connect with people who had MS and could use my skills to create a more direct impact.

What is your project and how will your project help people with MS and the MS community as a whole?

Tina: At Hack4Health, we proposed a platform that would help young women living with MS. During the hackathon we did some research and realized that women, especially around the age of 30, were not represented in the literature. As young women, we thought about what we would want if we were diagnosed with MS. We thought about things that are in our lives and the popularity of mobile applications and gaming. So, we decided to combine the two and see if we could gamify something to help young women manage MS symptoms, specifically pain and fatigue.

Rui: I think the number one thing we are focused on is to see if the mobile app is feasible and receptive for women with MS. If this framework is validated, it can open doors for other similar technologies to be used for other diseases in addition to MS.

What do you hope the outcome will be for women living with MS once they are able to use the app?

Marium: I think the primary outcome we are hoping to achieve is an improvement in the day-to-day lives of women living with MS.

Tina: We are also hoping to motivate women to be more physically active and I think our gaming app will do just that.

Based on your initial research on MS, have you thought about the type of routines that will be part of your platform?

Rui: Physical activities such as yoga and dance are currently used as fatigue management strategies, but because these activities are only available at scheduled times and quite infrequently, it makes it difficult for young women who are juggling a career and family to find time to participate. So, our project aims to include these and other activities in an app, and gather input from occupational therapists and physiotherapists, to ensure that such activities can be performed in the comfort of one’s home and at their own time.

Where did the team name Roze come from? Does it relate to the project?

Marium: We are looking to create an app for women with MS, so we picked a team name that had a more feminine meaning. We want women to feel empowered and feel that they “Roze” above the challenges of living with MS.

What are your plans moving forward after the completion of the mobile platform? How will the platform be tested and rolled out? 

Lori-Ann: We are planning to meet with people in the industry who are experienced in developing health-related apps. This will give us insight into the challenges involved with creating a gaming app. We hope to do this task in parallel to developing a prototype of the app and identifying the needs and interests of women living with MS.

Tina: Our long-term goal is figuring out how to bring the product to market. This may be through cooperation with an industry partner or creating a venture of our own.

What do you anticipate will be the biggest challenge?

Tina: We know apps and new technology go through phases of trends. A challenge we are anticipating is how to keep users engaged in the app long-term.

What do you hope to learn through the development of this app? Or what have you learned about MS?

Lori-Ann: Although we have already delved into research and identified existing support systems available for people with MS, it’s going to be really exciting to see firsthand the impact that this gaming approach has on the lives of individuals with MS.

Check out Team Roze’s Facebook page. Do you have questions or comments about Hack4Health or research involving MS and wellness? Leave them below.

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World MS Day 2017: Highlighting research that aims to make life with MS better https://drkarenlee.ca/world-ms-day-2017-highlighting-research-that-aims-to-make-life-with-ms-better/ https://drkarenlee.ca/world-ms-day-2017-highlighting-research-that-aims-to-make-life-with-ms-better/#respond Wed, 31 May 2017 12:43:36 +0000 https://drkarenlee.ca/?p=1592 Logo_HZ_-colour_2017EN

Coordinated by the MS International Federation since 2009, each year the last Wednesday in May marks World Multiple Sclerosis Day. May is also MS awareness month, where the MS community unites to raise awareness of the challenges of today and rallies to find solutions for tomorrow. In fact the MS Society of Canada spent a few days in Ottawa, Ontario this month to meet with parliamentarians and make the voices of people with MS heard. Check out the news article highlighting our advocacy efforts around securing income and employment, improving access and accelerating research.

#Lifewith MSWith the goal of helping better the lives of 2.3 million people living with MS world-wide, events around the world have highlighted what it means to live a #LifewithMS– the theme of this year’s World MS Day. The hashtag is being used around the world to share personal experiences and advice on how to improve life with MS.

Additionally, there is a great deal of research taking place around the world that has enormous potential to enhance #LifewithMS, whether it’s through the generation of new treatments, gathering insight into the risk factors for MS, or enabling the development of approaches that help people with MS manage symptoms.

The MS Society continues to invest in research that helps individuals with MS improve their quality of life. Some of this innovative research comes from our wellness platform, which highlights the need for more research in MS and nutrition, physical activity and emotional wellbeing.

The MS Society’s MS Wellness Survey, launched in 2015, prompted the design of funding opportunities that address unmet needs in wellness as identified by people affected by MS. The Hermès Canada I MS Society Wellness Research Innovation Grant competition and the Hack4health Wellness Project were among these new funding opportunities. Let me give you a quick update on both of these initiatives:

  1. Hermès Canada I MS Society Wellness Research Innovation Grants
  • Ann Yeh from the Hospital of Sick Children in Toronto set out to develop a mobile app to increase physical activity levels in youth living with MS. Based on interactions and input with teens with MS, exercise physiologists, neurologists, occupational therapists and mobile app developers the team is currently working to implement and integrate all the recommendations into a well-functioning mobile app.
  • Katherine Knox from the University of Saskatchewan launched a project aimed to provide better access to physical activity for people living with moderate to severe MS-related disabilities. Together with a team of physiotherapists and feedback from the MS community, Dr. Knox is testing a web-based physiotherapy tool to help people with MS manage their disease irrespective of geographical and economical barriers. The team is currently recruiting participants to test the web-based physiotherapy program.
  • Charity Evans from the University of Saskatchewan wanted to determine if a Pilates program would have an impact on #LifewithMS. In collaboration with Pilates instructor and community wellness leader Jana Danielson, Dr. Evans plans on looking at changes in walking ability, balance and quality of life after a 12-week Pilates program. The team has completed recruiting participants that are currently partaking in the Pilates program.
  1. Hack4Health
  • In the first University of Waterloo health-focused hackathon called Hack4Health, Team TBS was awarded a grant in 2015 from the MS Society, to develop a wearable device that would transmit information about a person’s MS symptoms to an app. Last year, Team Roze was selected in the second annual Hack4Health competition for their fitness app for women with MS- stay tuned for more details on the newly awarded Hack4health team and details about their project. Both teams have received a $15,000 grant from the MS Society of Canada – one of the top prizes at Hack4Health – to develop their MS wellness technology with a University of Waterloo faculty member.

Beyond the targeted wellness projects, we were pleased to see researchers and trainees that received funding from the MS Society’s 2017 Annual Research Competition focusing on research that seeks to improve the quality of life for people living with MS. Here are some highlights:

  • Marcia Finlayson from Queen’s University is working on a web-based fatigue management resource for individuals with MS. She is interested in seeing if this resource can improve cognitive function, and reduce depression.
  • Samantha Stephens from The Hospital for Sick Children plans to figure out if exercise is effective in reducing symptoms such as walking ability, relapse rates and quality of life for children with MS.
  • Justin Chee at University Health Network is working to develop a walking device that can detect changes in walking patterns, provide feedback about walking performance, and automating communication with local transportation.

Join the conversation about World MS Day and share with us your story on #LifewithMS in the comments below or on our communities on FacebookInstagram, and Twitter.

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New protein causing MS: Hope or Hype? https://drkarenlee.ca/new-protein-causing-ms-hope-or-hype/ https://drkarenlee.ca/new-protein-causing-ms-hope-or-hype/#respond Wed, 10 May 2017 19:12:24 +0000 https://drkarenlee.ca/?p=1585

How does multiple sclerosis begin? This is the million-dollar question and the answer to this question could lead to the ultimate goal of ending MS. Every year the MS Society of Canada invests millions in research to support scientists working to figure out the cause of MS.  While factors contributing to MS development and progression are slowly being discovered, a single cause of MS remains elusive. Recently, there has been a lot of talk in the news about a protein that is believed to be linked  to be the cause of MS, but what’s the hype all about? I had a chance to review the article published in Journal of Neuroinflammation and noted some interesting findings.

Here is the quick breakdown:

  • Researchers from the Universities of Exeter (UK) and Alberta found higher than normallevels of a protein called Rab32 in the brains of people with MS.
  • It is thought that elevated Rab32 protein may be associated with the dysfunction of mitochondria. Mitochondria are structures in our cells which are responsible for energy production throughout the body, enabling cells to function. Therefore, it is no surprise that when there is no energy present, a cell cannot function and often dies.

    A structure found in a cell: Mitochondria Credits: “mitochondria” Erin Hass/ CC BY 2.0

    A structure found in a cell: Mitochondria
    Credits: “mitochondria” Erin Hass/ CC BY 2.0

  • Because mitochondria play an important role in the cell, many scientists have looked deeper at these structures and found that they contribute to neurodegenerative (death of brain cells) diseases such as Alzheimer’s and Parkinson’s disease. Now this link expands to MS as well.
  • The researchers found that nerve cells and immune cells called microglia had higher quantities of Rab32 protein within MS lesions, which corresponded to changes in mitochondria that resulted in cell death.
  • These key findings provide a clue around the underlying causes of neurodegeneration in MS, which is especially important for individuals with progressive MS and those who are at risk of transitioning to secondary progressive MS.
  • It also helps us further understand the theory of energy exhaustion as a potential mechanism for nerve damage in MS and players that contribute to it.

So did they find the cause of MS?

These finding have gained significant media attention, but it’s important to note that this research is still in the preliminary stages (cell and animal research), and additional work is required to understand the applications of the research to the treatment of people with MS. However, the study represents an important step in enhancing knowledge on the cause of MS and the pathways that lead to neurodegeneration in MS.

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First drug for treatment of Progressive MS Approved by the FDA https://drkarenlee.ca/first-drug-for-treatment-of-progressive-ms-approved-by-the-fda/ https://drkarenlee.ca/first-drug-for-treatment-of-progressive-ms-approved-by-the-fda/#comments Wed, 29 Mar 2017 13:32:47 +0000 https://drkarenlee.ca/?p=1573 For people living with relapse-remitting MS, 1993 was a turning point.  Before then, the only relief available to people living with MS was with the use of relapse-management therapies like steroids, which were used to decrease the severity and duration of an MS relapse by suppressing inflammation, as well as symptom management therapies. However, no options were available that could modify the underlying disease course and prevent relapses from happening in the first place. All that changed in 1993, when the U.S. Food and Drug Administration (FDA) approved the first disease-modifying therapy beta interferon 1-b (Betaseron) for the treatment of relapsing forms of MS, ushering in the era of modern MS therapy. Following Health Canada’s own regulatory approval process, Betaseron was marketed in Canada in 1995.

Credits: "approve" by hobvias sundoneighm / CC BY 2.0

Credits: “approve” by hobvias sundoneighm / CC BY 2.0 <https://creativecommons.org/licenses/by/2.0/>

Since that seminal year, 13 more disease-modifying therapies have been approved for the treatment of relapsing forms of MS. People living with relapsing forms of MS not only have access to treatments; they also have treatment options, including alternatives to injections with oral therapies, reduced dosing schedules, and alternatives in cases of unresponsiveness or intolerance to another therapy.

On the other hand, effective treatments for progressive forms of MS have been far more elusive. The search for progressive MS treatments has been affected by several notable challenges, including properly defining progression, understanding the mechanisms responsible for the accumulation of disability, and coming up with reliable biomarkers for measuring progression and response to treatment for use in clinical trials.

Just like in 1993, the tide is beginning to turn, and the treatment era for progressive forms of MS is finally upon us. On March 28, 2017, the FDA announced its approval of Ocrevus™ (ocrelizumab) for the treatment of both primary progressive and relapsing forms of MS in the US. This announcement has come on the heels of considerable anticipation that has been building since results from the ORATORIO clinical trial were first presented at the European Committee for Treatment and Research in MS (ECTRIMS) Congress in Barcelona in 2015 and then later published in the New England Journal of Medicine. The results showed that Ocrevus, developed by Genentech (Roche), eliminates harmful white blood cells called B cells that leads to a modestly but significantly reduced risk of progression of clinical disability compared to treatment with a mock drug.  Other benefits of Ocrevus include a long-term reduction in the proportion of people that progress in their  disability, decreasing the size of brain lesions, and reducing the rate of brain shrinkage.

Based on the promising results of the ORATORIO trial (not to mention the OPERA I and OPERA II trials, which showed dramatic improvements in reducing relapse rates compared to interferon beta-1a in participants with relapsing forms of MS), the FDA fast-tracked the approvals process of Ocrevus to ensure it would be completed by the first quarter of 2017. While this can seem like an eternity for people who have been waiting years or decades for a breakthrough, it is encouraging to see that clinical trials for progressive forms of MS have begun to make a striking impact on the treatment landscape and are becoming a top priority for regulatory bodies.

What does this news mean for Canadians living with primary progressive MS? We do know that Genentech has submitted a drug marketing application for Ocrevus to Health Canada. FDA approval only covers marketing of a drug in the United States, and Health Canada needs to conduct its own review of data related to a drug before deciding to market a new drug in Canada. We’ll be keeping a close eye on the status of Ocrevus’ application to Health Canada – in the meantime, take a look at our Frequently Asked Questions which we will be keeping up-to-date with the latest news.

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Multi-million dollar initiative launched to study the progression of MS https://drkarenlee.ca/multi-million-dollar-initiative-launched-to-study-the-progression-of-ms/ https://drkarenlee.ca/multi-million-dollar-initiative-launched-to-study-the-progression-of-ms/#comments Tue, 28 Mar 2017 13:08:37 +0000 https://drkarenlee.ca/?p=1567 Today the MS Society of Canada, along with Biogen Canada and Brain Canada, announced something that could change the way we understand, diagnose, treat and ultimately cure MS. I am excited to share the news with Canadians that a $7+ million study will be launched within a year, which focuses on studying progression in MS over time.

This announcement of the call for proposals to develop the Canadian MS Progression Cohort was welcomed with a flood of excitement by the MS community, but a lot of work remains and it will take several years before results from this large-scale study are generated. The study will begin in early 2018 and will be conducted by a team of researchers from across Canada that will competitively be selected. The successful team will examine people living with MS in Canada over a minimum of 5 years. With the generous support from our funding partners Biogen Canada and Brain Canada who are each contributing more than $2 million to the project, and with the remarkable contributions of over $2 million from PCL Construction and Bennett Jones LLP, the team will have the resources to build infrastructure that will enable to them to study progression from biological, lifestyle, and real-world perspectives. The Canadian MS Progression Cohort is a unique opportunity to observe the ways in which people living with all forms of MS progress in their disease, in order to pinpoint the exact triggers of progression and establish tools that can detect and monitor those triggers.

cohort 1This project marks a major milestone for the Canadian MS research and medical communities, as it is the first of its kind in the country that will address why certain people with MS progress in their disease and others do not, or why the rate of progression is faster for certain individuals and how that progression impacts them, their family and communities. The research team will investigate biological changes that occur during progression, the effects of treatments on disease progression, real-world health outcomes, socioeconomic impacts, and many other factors. This initiative will not only generate one of the most comprehensive MS databases, but will also encourage coordinated and collaborative research effort across Canada, engage the voice of people living with MS, and build an open resource that will not only benefit the Canadian MS research community but also researchers who look at other neurological diseases.

As news of this initiative was made public today, the shared feeling in the room was one of optimism for the future, as the results from this study could provide insight into elements of the disease that haven’t been investigated at a level of this magnitude before in Canada. We heard from Chantal Milne (diagnosed with MS in 2012), who took the podium and profoundly moved the crowd with her inspiring words. She spoke not only to what this study could mean for her, but also for her daughter and future generations of Canadians. “I am hopeful, I am confident, and I know we can do this. With some of the world’s best MS clinicians and researchers involved in this study, maybe by the time my daughter can ask me about what MS is and how it will impact me – maybe, just maybe – I will have the answer. That is where I want my MS journey to go, and the MS progression study is giving me a road map to get there,” says Chantal.

The importance of long-term interdisciplinary studies like the Canadian MS Progression Cohort are instrumental in finding connections and patterns between groups of people that may not have been distinguishable when examined in isolation or over a short period of time. The ability to collect and analyze different types of biological, clinical and real-world data from many different people living with MS provides a substantial opportunity for answers in a field of study where there are still so many uncertainties. Progression remains one of the complex, unaddressed features of MS that leads to debilitating outcomes for people affected by MS, and understanding progression will only be possible by following people over time.

Ultimately, this project could impact how we treat MS, how we diagnose MS, how people live with MS, and change how we talk about MS progression altogether – this is a significant pursuit of knowledge, one that could dramatically change the landscape about what we know about MS.

To find answers to any questions you might have about the trial, take a look at our Canadian MS Progression Cohort study FAQ.

Do you have any thoughts on the Canadian MS Progression Cohort study? Share them with us and leave a comment below.

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Depression and Disability: Playing a role in opinions about Physician Assisted Death? https://drkarenlee.ca/depression-and-disability-playing-a-role-in-opinions-about-physician-assisted-death/ https://drkarenlee.ca/depression-and-disability-playing-a-role-in-opinions-about-physician-assisted-death/#respond Tue, 21 Mar 2017 20:23:51 +0000 https://drkarenlee.ca/?p=1564 Each person living with multiple sclerosis (MS) experiences a different journey. Life with MS can sometimes be difficult, especially when the person faces depression, anxiety, disability and pain, which all impact their quality of life.  So, when MS Society of Canada-funded researcher and MS neurologist Dr. Ruth Ann Marrie from the University of Manitoba and her colleagues decided to reach out to people living with MS to hear their views on physician-assisted death (PAD) (or medical assistance in dying)- it brought about some  interesting data that warrants further understanding of the significant life challenges in MS that need to be addressed.

Who was surveyed and what did they have to say?

Adapted from Marrie et al., 2017.

Adapted from Marrie et al., 2017.

More than 7,500 people responded to a survey about physician-assisted death, which Dr. Marrie and colleagues administered through an active global MS registry called the North American Research Committee on Multiple Sclerosis (NARCOMS). The survey found 7% of responders would consider PAD in all of the following hypothetical situations: (1) experiencing unbearable pain; (2) causing a financial burden to caregivers; (3) feeling extreme emotional distress; (4) inability to do things that make you happy; and (5) inability to enjoy anything that makes your life worth living. It also found that 20% of responders would not consider PAD in any of the situations.

The situation in which most of the responders would consider PAD is if they were to experience unbearable pain (65%), and nearly 50% of the surveyed individuals would probably or definitely consider it if they were unable to enjoy anything in life that would make life worth living.  Other things discussed in the survey which contributed to consideration of PAD include financial burden to caregivers, inability to be happy and feelings of extreme emotional distress.  In each of the situations except for unbearable pain, over one-third of responders indicated that they would probably or definitely consider PAD.

One thing to keep in mind is that certain groups of people living MS may not be captured in this snapshot.  In fact, there was a difference of age and race between the people that answered compared to people that did not answer the survey.

There were certain factors which influenced the responders’ thoughts around PAD- disability and depression being two of them.  Interestingly, depression was also found to be linked with thoughts of PAD in people living with AIDS, which research shows can be reduced if the depression is effectively treated. Recently, MS Society-funded researcher and neuropsychiatrist Dr. Anthony Feinstein from Sunnybrook Research Institute published an article in Multiple Sclerosis Journal on the link between leisure activities and depression.  He found that depression in people living with MS leads to reduced participation in leisure activities such as reading and writing. The high prevalence of depression in people with MS and its impact on quality of life is an important piece that needs to be further studied, especially in light of the findings from Dr. Marrie’s PAD survey. Additionally, the importance of social support for people with MS is highlighted in the survey, as higher levels of social support and engagement in religious activities such as attending church, were associated with a lower likelihood of considering PAD.

In 2015 the Supreme Court of Canada ruled that a competent adult with a “grievous and irremediable medical condition” has the right to end their life. However, we would be remiss if we did not state that MS is a complex disease and it is important to figure out the factors that influence health and long term care decisions. This survey stresses the importance of providing adequate support for people living with MS, in addition to addressing the high rate of depression and developing ways to adequately diagnose and treat depression early on in people with MS.

The MS Society provides many services that can help people get cope and live with the disease.  If you want to find out more about MS and how to cope with it or if you have any question regarding the disease- connect with an MS navigator by calling 1-844-859-6789 or emailing them at msnavigators@mssociety.ca.

Source:  Marrie RA et al. (2017) High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. [Epub ahead of print]


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ACTRIMS 2017: Putting the microbes in our gut under the microscope https://drkarenlee.ca/actrims-2017-putting-the-microbes-in-our-gut-under-the-microscope/ https://drkarenlee.ca/actrims-2017-putting-the-microbes-in-our-gut-under-the-microscope/#respond Sat, 25 Feb 2017 18:53:18 +0000 https://drkarenlee.ca/?p=1557 Each person’s gastro-intestinal system is home to trillions of bacteria collectively known as the gut microbiota. These tiny creatures are essential partners in good health, and in less than a decade MS researchers have gone from considering the gut microbiota to be a curiosity to gathering evidence that disruption of the gut’s natural bacterial balance is linked to MS. A powerful method of studying the gut microbiota is to investigate the gut microbiome – the genetic composition of the microbiota. Unresolved questions about the gut microbiome persist, such as: Do people with MS have different microbiome “fingerprints” than people without MS? Does the gut microbiome play a functional role in modifying MS risk and/or disease course? Does the gut microbiome represent a potential therapeutic target in MS? Leaders in the field of MS and gut microbiome research here at ACTRIMS 2017 presented some of the latest findings that tackle these questions.

Wild garden of the gut bacteria (Credits: Nicola Fawcett; Wikimedia Commons)

Wild garden of the gut bacteria (Credits: Nicola Fawcett; Wikimedia Commons)


Renowned MS researcher Dr. Howard Weiner (Harvard Medical School) presented findings from an exploratory study that measured and compared the gut microbiome in 60 people living with MS and 43 healthy controls. His team found that people with MS had a unique microbiome “signature”, set apart by increases in the bacterial genus Methanobrevibacter and Akkermansia, and a decrease in Butyricimonas. Importantly, these changes in the gut microbiome profile correlated with the expression of genes in T cells and monocytes involved in key pathways linked to the MS disease process, which suggests that changes in the microbiome may help to trigger or drive MS, although it’s still not known if these changes are a cause or consequence of the disease. Another interesting finding was that elevated methane was detected in a certain proportion of the MS group, which is thought to be linked with increased Methanobrevibacter presence in the gut; future studies could investigate whether breath methane could be used as an easy-to-collect biomarker for MS.

Dr. Weiner also presented preliminary data from a study examining the effect of probiotics on the gut microbiome and its potential implications for MS. In a clinical context, probiotics are live, non-toxic micro-organisms that are being actively investigated for their potential benefits in health and disease. Dr. Weiner described a small pilot study in which 9 participants with MS and 13 healthy controls were orally administered VSL#3, a probiotic which has shown evidence of potential benefits in mice with an MS-like disease by both encouraging anti-inflammatory and discouraging pro-inflammatory immune responses. After being administered twice daily for 2 months, VSL#3 changed the relative composition of the gut microbiota compared to before treatment, which was accompanied by a decrease in peripheral levels of pro-inflammatory immune cells and signaling molecules in both the MS and healthy control groups. Discontinuation of VSL#3, on the other hand, was associated with a decrease in the levels of anti-inflammatory regulatory T cells. These findings, while promising, are still very preliminary, and larger studies looking at MS-specific clinical and imaging outcomes will be necessary to probe the potential benefits of probiotics like VSL#3.

Since children and adolescents in general have had fewer environmental and lifestyle exposures in life compared to adults, including exposure to diets, infections and so on, the study of the gut microbiome in pediatric MS offers a unique window in which to explore the possible triggers or modifiers of the disease. MS Society-funded researcher Dr. Helen Tremlett (University of British Columbia) presented findings from two studies probing the relationship between gut microbiome and pediatric MS. The first, a case-control study conducted by Dr. Tremlett and Dr. Emmanuelle Waubant (University of California San Francisco), compared the gut microbiota in 18 cases of new-onset pediatric MS and 17 healthy controls. They found that children with MS had subtle differences in the gut microbiota that were suggestive of a pro-inflammatory profile compared to those without MS. However, the study was not designed to answer the question of whether the gut microbiota can influence MS relapses. To answer this question, a second study examined children with early pediatric MS over time to determine if specific gut microbiota “signatures” are associated with subsequent relapse risk. Dr. Tremlett and her team found that the composition of the gut microbiota in children with MS was associated with relapse risk; specifically, individuals lacking one particular genus of gut microbe – Fusobacteria – were 3.2 times more likely to suffer an earlier relapse than individuals who tested positive for the bacteria. Although these observations warrant more research, they may pave the road for modifiable targets to improve outcomes in both pediatric and adult MS. Dr. Tremlett is continuing this important work with funding from the MS Society-affiliated MS Scientific Research Foundation in collaboration with the Canadian Pediatric Demyelinating Disease Network and the US Network of Pediatric MS Centers.

Interested in learning more about the relationship between the gut microbiome and MS? Leave your comments below.

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ACTRIMS 2017: What we know (and don’t know) about dietary factors and MS https://drkarenlee.ca/actrims-2017-what-we-know-and-dont-know-about-dietary-factors-and-ms/ https://drkarenlee.ca/actrims-2017-what-we-know-and-dont-know-about-dietary-factors-and-ms/#respond Sat, 25 Feb 2017 05:04:51 +0000 https://drkarenlee.ca/?p=1553 The interaction between dietary factors and MS can be a tough nut to crack. On one hand, there is mounting evidence to show that certain nutrients and dietary factors can influence immune regulation and potentially modify the risk of MS or its disease course. On the other hand, dietary factors are notoriously challenging to study in a controlled clinical trial setting; diet trials are difficult to design, results can be influenced by a plethora of other factors (including physical activity, socioeconomic status, certain lifestyle habits, etc.), and individuals often find it challenging to adhere to the intervention plan. Nonetheless, there’s a great deal of high caliber research taking place that’s chipping away at the mysteries surrounding the relationship between certain dietary factors and MS risk and disease course. At this year’s ACTRIMS Forum, several experts in the field presented some of the latest data on this file.


Dr. Ellen Mowry (Johns Hopkins University) presented a sweeping overview of what’s known (and what isn’t) about the association between vitamin D and MS – although it’s important to remember that diet represents only one source of vitamin D alongside sunlight exposure and supplementation. On the one hand, observational studies studying large groups of people have shown that lower levels of 25-hydroxyvitamin D (25(OH)D – the major circulating form of vitamin D used to determine vitamin D status – are associated with an increased risk of MS. In those already living with MS, lower 25(OH)D levels are linked to a greater risk of subsequent relapse, new lesions on imaging scans, and possibly greater disability progression and brain shrinkage.

Based on small, inconclusive pilot trails thus far, the influence of vitamin D supplementation on MS outcomes is still uncertain. Dr. Mowry presented preliminary data from the SOLAR trial, which is testing the effects of vitamin D supplementation (6,670 IU/day for 4 weeks followed by 14,000 IU/day for 44 weeks) as an add-on to interferon beta-1a (Rebif) on MS outcomes, versus placebo and Rebif. The data so far shows no significant effect of vitamin D supplementation on annualized relapse rate or NEDA (no evidence of disease activity – a composite score indicating no relapses, no EDSS change, and no new or enlarging lesions), although the vitamin D group did have fewer combined unique lesions on MRI compared to placebo. Overall, questions about vitamin D supplementation – such as how much to take, how often and for how long – for people living with or at risk of developing MS remain unanswered, although the MS Society is working with vitamin D and MS experts to provide more clarity for these questions.

Professor Ralf Linker (Friedrich-Alexander University Erlangen-Nuremberg) presented work on the link between dietary fats and risk of MS. Dietary fatty acids appear to have differing effects on measures of autoimmunity depending on their chain length (chains of carbon atoms linked by bonds). Long chain fatty acids promote the activity of disease-causing T cells such as Th1 and Th17 cells, whereas short chain fatty acids enhance the activity of regulatory T cells which are known to quiet down inflammation. Prof. Linker presented findings from both studies in mice with an MS-like disease and in human participants showing that propionate, a short chain fatty acid, can potentially improve MS disease outcomes. In a proof of concept study, participants living with MS and healthy controls were given propionate capsules for a period between 14-60 days (1g daily), and their immune cell profiles were analyzed. Propionate increased the proportion of beneficial regulatory T cells while decreasing disease-causing Th17 cells in all treated individuals, and these effects were sustained for 2-3 weeks after propionate treatment was stopped. These results suggest that intake of short chain fatty acids could potentially provide additional benefit as an add-on to treatment with disease modifying therapies, although further studies are needed to look at their effects on specific disease outcomes.

There’s mounting evidence to suggest that salt (specifically, sodium chloride) intake could influence MS disease course. Dr. David Hafler (Yale School of Medicine) presented findings from both animal and human studies showing that sodium chloride increases certain inflammatory markers like Th17 cells that are linked to the MS disease process while curbing the activity of beneficial regulatory T cells. Dr. Hafler dug even deeper to show the molecular mechanisms underlying this response, showing that blocking certain molecular pathways could undo the stimulation of disease-causing Th17 cells by sodium chloride. Interestingly, pairing high salt intake with increased fat intake – in essence mimicking a “fast food” diet – in mice similarly led to an increase in Th17 cells and a loss of regulatory T cells. Overall, high salt and fat intake appear to be linked to poorer immune responses. Although the benefits of dietary modifications for people living with MS on MS-specific outcomes are still unclear, strong evidence points toward lower salt intake in particular being beneficial for cardiovascular-related comorbidities, many of which are more prevalent in people with MS compared to the general population.

In addition to the challenges involved in testing the effects of certain dietary interventions on MS disease outcomes, little is known about what types of diets people with MS follow in the “real world”, their reasons for following these diets, and their perceived effectiveness. Dr. Kathryn Fitzgerald (Johns Hopkins Hospital) and a team of population health specialists conducted a survey among participants in the North American Research Committee on MS (NARCOMS) registry asking about 19 specific diets or diet plans – including Mediterranean, Swank, Wahl’s, Atkins, Weight Watchers, etc. – they followed since being diagnosed with MS. Of the 7,418 individuals who responded, 44% reported that they either currently or previously followed at least one diet plan. The highest proportion of respondents (21%) currently followed a gluten-free diet, whereas 45% previously followed a weight loss plan diet. 15% of individuals either currently or previously followed the Swank diet, and 8% currently or previously followed the Wahl’s diet. The perceived effectiveness of the different diet plans varied; 88% of those on the gluten-free diet felt that it was effective in helping their MS; 73% of those on a weight loss plan diet felt it was effective; 50% of those on the Swank diet considered it effective, and 61% of those on the Wahl’s diet thought it was effective. Overall, the study fills a gap in our knowledge about how different diet plans are approached and perceived among people living with MS.

What are your experiences with different diet plans? Leave your comments below.

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Genetics and environmental/behavioural factors top the agenda at ACTRIMS Forum 2017 https://drkarenlee.ca/genetics-and-environmentalbehavioural-factors-top-the-agenda-at-actrims-forum-2017/ https://drkarenlee.ca/genetics-and-environmentalbehavioural-factors-top-the-agenda-at-actrims-forum-2017/#respond Thu, 23 Feb 2017 21:44:52 +0000 https://drkarenlee.ca/?p=1548 actrims_logo_450-glow

Bringing scientists and clinicians together under one roof to share knowledge and forge collaborations is a key stage in moving MS research forward. This year’s Americas Committee for Treatment & Research in Multiple Sclerosis (ACTRIMS) Forum kicks off today in Orlando, Florida. The research team is on site to absorb the latest research and clinical findings in the field and distill the information down into digestible, take-home messages for our readers.

The theme of this year’s forum is “Environmental Factors, Genetics and Epigenetics in MS Susceptibility and Clinical Course”. Not surprisingly, we’ll be hearing a lot about hot topics like interactions between MS and diet, why women are more susceptible to MS than men, the role of viral infections and the gut microbiome in MS, and new insights from in-depth genome-wide analyses to pinpoint genetic variants associated with MS. Many of these topics have grown from niche topics on the fringes of scientific investigation into comprehensive and evolving fields of study in their own right, so we’re looking forward to some fresh and exciting insights into how our genes, our environment, and our behaviours can influence MS.

#actrims2017 attendees are in for a packed schedule over the next few days.

#actrims2017 attendees are in for a packed schedule over the next few days.

Stay tuned for more updates on #actrims2017 over the next few days, both here on the blog and on Twitter at @Dr_KarenLee.

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