We Have Come So Far

When Sylvia Lawry started the MS movement in 1946 with the founding of the National MS Society, research into multiple sclerosis was almost non-existent. The disease took years to diagnose, and there were no therapies proven to slow the course of MS.

Things have changed. Decades of research into MS and the basic workings of the immune and nervous systems have built a critical platform of knowledge now serving as a springboard for progress. The Society’s $1.06 billion research investment has fueled many of these advances, and today’s picture looks different for many:

• There are therapies specifically approved for treating and managing MS, and more potential MS therapies in development today than at any other time in history.

• MS is more quickly diagnosed, enabling early and sustained therapy to slow disease activity

• There is much greater awareness of the many symptoms of MS and ways to address them to improve quality of life

• Scientists are making breakthroughs in identifying risk factors that can increase a person’s susceptibility to MS, which will help lead to ways to prevent the disease.

We have made progress but more must be done for those living with forms of progressive MS for which there are limited treatment options.  The hope – and potential - for new, more effective treatments for MS has never been greater. We are part of a global movement of millions of people working toward a world free of MS.

Critical Milestones

1981 - First MRI pictures of a brain affected by MS are produced, revolutionizing MS diagnosis
1984 - First modern documentation of cognitive problems in MS
1988 - First demonstration, using MRI, of significant lesion activity in MS, even when the disease seems quiet
1993 - First disease-modifying therapy for relapsing MS approved
1996 - First proof that aerobic exercise improves physical and psychological well-being in MS
1999 - Society grantees first to isolate immature cells in the adult brain capable of developing into replacements for myelin-making cells destroyed by MS
2003 - Italian researchers transplant cells to enhance nerve tissue repair in mice with MS
2004 - Pivotal study by Society Fellow shows that African-Americans tend to have a more aggressive course of MS than Caucasians
2005, 2010, 2018 - “McDonald Criteria” for diagnosing MS updated by Society Task Force, speeding time to diagnosis for many
2007 - With support from Society to International MS Genetics Consortium, two genes are confirmed to be linked to MS risk; many more uncovered since
2007 - First large-scale trial of sex hormone estriol gets underway in women with MS, a result of the Society’s targeting of gender differences
2010 - First oral disease-modifying therapy approved for relapsing MS
2012 - Launch of Progressive MS Alliance to speed the development of therapies
2013 - Studies hint that exercise and rehabilitation can improve many functions and even help rewire the brain
2014 - First large, phase 2 clinical trials of myelin repair strategy for MS are launched
2015 - A phase 2 clinical trial co-funded by the Society suggests a pill used to treat epilepsy (phenytoin) has the potential to slow the accumulation of disability in people with MS
2015 - Results of phase 2 trial of anti-LINGO suggests it has potential as myelin repair strategy 
2015 - Society co-hosts international conference on cell-based therapies to forge next steps for cell therapy in MS
2015 - Society funding helps launch MS Microbiome Consortium to promote research on role of gut bacteria in MS progression and treatment
2015-16 - Two large-scale clinical trials break through long-standing barrier by showing benefit in primary progressive and secondary progressive MS
2016 - Positive results announces from two studies of bone marrow-derived stem cells (HSCT) in people with aggressive, relapsing MS; more research focuses on who might benefit and how to reduce risks
2016 - Society-funded International Consortium of MS Genetics identifies 200 genetic variations linked to MS, offering new leads to how genes and other factors that make people susceptible to developing MS
2016 - Society launches two new studies testing the ability of dietary approaches to treat MS symptoms and improve quality of life  
2016-17 - International Progressive MS Alliance awards three large-scale Collaborative Network Awards to promote solutions for people with progressive MS
2017 - FDA approves Ocrevus (ocrelizumab) as first disease-modifying therapy for primary progressive MS, and also as a therapy for relapsing MS
2017 - International team co-sponsored by the Society revised MS diagnostic criteria to speed diagnostic process and reduce incidence of misdiagnosis
2018 - FDA approves expansion of the use of Gilenya to include children and adolescents 10 years of age or older with relapsing MS, the first therapy specifically approved to treat pediatric MS
2018 - A Phase 2 trial showed that ibudilast could reduce brain atrophy in progressive MS. The trial was funded collaboratively by the National MS Society, the NINDS, its NeuroNext trials network, with support by MediciNova, the supplier of ibudilast 
2018-19 - Results announced from several studies of bone marrow-derived stem cells in people with aggressive, relapsing MS. More research is focused on who might benefit and how to reduce risks
2019 - Study sponsored by the National MS Society conducted by leading experts estimates that nearly 1 million adults are living with MS in the United States. This is more than twice the previously reported number
2019 - FDA approves oral Mavenclad (cladribine) for adults with relapsing forms of MS, and also approves oral Mayzent (siponimod) for adults with clinically isolated syndrome (an initial neurological episode) and relapsing forms of MS
2019 - FDA approved Vumerity™ (diroximel fumarate, Biogen and Alkermes plc) for relapsing MS
2020 - National MS Society releases recommendations for aHSCT-bone marrow transplant for MS
2020 - FDA approves generic form of Tecfidera for relapsing MS
2020 - FDA approves Kesimpta® (ofatumumab) for relapsing MS
2020 - Society-supported Wellness Research Group publishes exercise and physical activity recommendations for ALL people with MS
2020 -  National MS Society, Consortium of MS Centers, and others establish the North American MS COVID-19 Clinical Database
2020 - FDA approves Oral Bafiertam™ (Monomethyl Fumarate) for relapsing MS
2020 - FDA approves Oral Zeposia® (Ozanimod) for relapsing MS

Download a Timeline of MS Research Progress (.pdf).

 

Can Vitamin D Help MS?

 By Stephanie Watson

You might have heard that vitamin D helps to lower the risk for multiple sclerosis (MS). Or that it helps lessen symptoms in people who already have the disease. Evidence suggests that getting enough of this vitamin might protect against MS by holding back your immune system from attacking your own nerve cells.

But the link between vitamin D and MS isn't proven yet.

The MS-Vitamin D Link

This fat-soluble vitamin acts like a hormone in your body. Vitamin D also helps your immune system work better and to tamp down inflammation.

Those protective actions are important in autoimmune diseases like MS where your body turns against itself. In MS, cells of your immune system attack the coating around nerve fibers, called myelin, and leads to such hallmark symptoms as numbness, weakness, and blurry vision.

Research finds that vitamin D might help repair myelin and guards your nerves from damage.

Can Vitamin D Prevent or Slow MS?

Researchers aren’t sure if vitamin D can keep you from getting MS in the first place. Your body makes most of the vitamin D it needs from sunlight on your skin. People in northern climates like Scotland and Scandinavia are more likely to have MS compared with those who live in much sunnier climates. Studies show that people who get more sunlight and more vitamin D in their diets have a lower risk for MS overall.

There's some evidence that vitamin D might slow MS and make the disease less severe. Studies have found a link between higher vitamin D levels in the blood and less active disease, fewer lesions in their brain and spinal cord, and fewer relapses of symptoms.

In other studies, people with MS who had higher vitamin D levels had less severe disease and disability.

Do I Need More Vitamin D?

It's common for people with MS to be low on this vitamin. It may be hard for you to get outside to get sun often enough. Low vitamin D can also be a side effect of corticosteroids and other MS medications.

Your doctor can run a blood test to check your vitamin D level. You might be able to make up the difference by eating more fatty fish, eggs, and other foods that are high in vitamin D. Or, your doctor might suggest you take a supplement.

It's not clear whether taking a daily vitamin D supplement protects people from getting MS, or slows the disease in those who already have it. Studies suggest it might help, but this hasn't been proven. But since supplements are usually safe to take, it may not hurt to try them.

What Dosage Is Best?

Experts can’t say how much vitamin D is needed to prevent or slow MS. Different medical groups disagree on the ideal amount.

Official recommendations for adults is 400 to 600 international units (IUs) of vitamin D daily.

Ask your doctor what’s right for you. Be careful not to overdo it. Vitamin D helps your body absorb calcium, and you might end up with too much of that mineral. High calcium levels can weaken bones, damage the heart, and increase the risk for kidney stones.

If you already have MS, your doctor can check whether your vitamin D levels are too low. If so, it might make sense for you to take a supplement.

 

Experts Agree on Pathways to MS Cures

 A global collaboration led by the National MS Society is focusing on the most promising research to cure multiple sclerosis for every person affected by the disease. Just as the experience of living with MS is different for every person, every person’s cure for MS may be different.
 
The Pathways to Cures for MS Research Roadmap, which outlines the research needed to reach these cures, has been published in the Multiple Sclerosis Journal.
 
“Curing MS is within our reach,” said Bruce Bebo, Ph.D., Executive Vice President of Research at the National MS Society, and lead author on this paper. “And when we talk about curing MS, we’re talking about curing MS for everyone. The roadmap, now endorsed by over 20 national and international MS organizations, will drive progress by increasing alignment and focus of global resources on high priority research questions.”
 
The research is focused on three distinct — yet overlapping pathways: stopping MS disease activity, restoring function by reversing damage and symptoms and ending MS by preventing new cases.
 
Explore each pathway at pathwaystocures.org
 
In this roadmap, the National MS Society outlines the research needed to: 

• Reduce or eliminate the impact of MS before symptoms appear through early detection.
• Prevent worsening of quality of life and prevent disease progression for each person with MS through precision medicine. 
• Improve tissue repair to reverse or slow MS progression and improve symptoms.
• Implement rehabilitation and symptom management strategies to restore function, reverse MS symptoms and enhance quality of life.
• Prevent MS before it occurs by limiting exposure to MS risk factors in the general population.
• Reduce or eliminate the impact of MS before onset of signs/symptoms by identifying pre-clinical MS in the high-risk population.

 Authors of the paper highlight the need to increase participation of underrepresented groups in MS research. The lack of diversity in MS research is a critical issue limiting progress.

This roadmap is designed to be a starting point for a dialogue among MS organizations. The authors encourage MS research funders and advocates to seek more opportunities to collaborate on research that addresses the areas targeted in the roadmap. The National MS Society has already begun supporting research projects aligned to this to help drive progress in these critical pathways.
 
An initiative this scale requires significant early momentum and leadership. The National MS Society is grateful for the support of our Pathways to Cures Lead Investors – Kathleen and Jim Skinner, Laura Larson, Cathy and Bill Onufrychuk, and an anonymous donor – who have collectively contributed $13 million to bring this roadmap to the world and inspire action. “We are pleased to be at the front of this incredible work and have confidence that the National MS Society has what it takes to provide leadership in the global MS movement,” said Kathleen and Jim Skinner.

“Pathways to Cures for Multiple Sclerosis Research Roadmap,” by B.F. Bebo, M. Allegretta, D. Landsman, K.M. Zackowski, F. Brabazon, W.A. Kostich, T. Coetzee, A. Ng, R.A. Marrie, KR Monk, A. Bar-Or, and C.C. Whitacre on behalf of the National MS Society’s Scientific Advisory Committee and Pathways to Cures Roadmap Task Force, is published in the Multiple Sclerosis Journal.
 
This is an open-access paper and can accessed in full by anyone.

Novel Twins Study Pinpoints Immune System Activity Early in MS Not Accounted for by Genes

 

A new study from the University of Zurich identified immune system patterns in people with MS that may be clues to how MS is triggered. The MS Twin Study – 61 sets of identical twins in which only one twin had MS – is a unique opportunity to study early biological events in MS. Twins have identical genes, so this allows researchers to distinguish other non-genetic differences that may underlie MS.

In this study, researchers used state-of-the-art technologies such as mass cytometry (exploring millions of cells) and machine learning (an automated type of data analysis) to look at the immune profiles of these sets of twins. The results showed key differences in docking sites on immune messenger proteins (cytokines), that affect how immune cells communicate with each other. These differences left people with MS susceptible to greater activation of the cells that drive immune attacks in MS.

Although twins do share early environmental experiences (such as  prenatal influences), these results suggest that a later environmental factor or factors might be at play. Ongoing research by scientists around the world are working on identifying those factors and how they launch the disease.

Read more from the University of Zurich

Read the paper, available from Nature via Open Access

Fatigue

From: WebMD, David Spero, RN

Fatigue is more than feeling tired after a long day.  It’s an ongoing feeling of exhaustion that often does not go away even after a nap.  Fatigue is one of the most common and most disabling symptoms of MS. 

I can testify to the disabling part.  I’ve had weeks when I could barely get out of bed. Others agree. One user of our Facebook page commented, “I have just slept for 3 days with only 1- to 2-hour gaps. So fatigued it’s not funny. Can’t even eat without it draining my energy.”

Causes of MS Fatigue

MS fatigue has many causes.  Inflammation from the immune system’s attack on nerves is one. Nervous system struggling to adjust to myelin damage is another.  MS-related sleep problems or muscle weakness, urinary problems, pain, anxiety, and depression can all cause fatigue.

Fatigue often varies with our environment and behavior. When I get too warm, I can’t even sit up at my desk. After eating a big meal, I just want to fall asleep. If I overdo activities, I might pay for it with hours or days of fatigue.  I can avoid all these attacks by avoiding the triggering behaviors.

How Fatigue Affects Our Lives

MS is often called an invisible illness, and fatigue is the least visible part.  Family or friends might want us to do something, and all we can say is, “I’m not up to it.” They might think we’re making excuses, or they might stop asking, even though at other times we’re good to go.

For years, I noticed that I would get tired after eating, to the point of needing a nap. Then I found out about thermogenesis, the way the body heats up after eating.  I’m one of the many MS patients whose symptoms are worse when I’m warm, so thermogenesis can knock me out. Now I eat smaller meals and don’t have that problem. Protein raises body temperature more than other foods, so I never eat much protein at one time.

Warm air temperatures also exhaust me, like many people with MS.  I stay out of the sun on warm days and carry a little fan with me if I have to go out.  I make sure to stay hydrated, because bad things happen to me if I get warm or dehydrated. I might fall and not be able to get up.

It took me years to figure out that mental fatigue can be as dangerous as physical. I notice that when I’m warm or tired, I’m prone to misjudgments and stupid mistakes. I might try to reach something on a high shelf or trip over a shoe on the floor, things I would never do when not tired.  I might think I can carry something heavy, maybe something I could carry at my best but shouldn’t try when fatigued.  I’ve learned never to make important life decisions while fatigued.

Like most people with MS, I have good days and bad days.  On a good day, there’s a strong temptation to do all the things I couldn’t do on bad days, to live a month of life in a day.  When I do that, I pay with days or weeks of fatigue.  Sometimes we can accept that trade-off for a special occasion, but in general it’s important to keep some energy in reserve.

Physical therapists say it’s crucial to keep moving our bodies. Keeping still all day can add to fatigue.  Sometimes it’s hard to move, but you should try to find some way to exercise lightly.  Stretching and strengthening exercise make it easier for me to move.

There are medications for fatigue that work for many patients. The easiest one is caffeine. A cup of coffee or tea might pick you up. Green tea works for me. I hear from patients that prescription medicines such as Provigil can be great boosters.

At Least It Doesn’t Hurt

The good thing about fatigue is that we can be comfortable with it, as long as we have a good place to sleep.  It doesn’t hurt. Fatigue can be terribly depressing, though, keeping us from doing things we really want to do or need to do. Don’t be afraid to seek help from your doctor or a therapist or to take medicines for depression or anxiety if your MS is taking you there.

Don’t forget to breathe and to relax, meditate, or pray. Tension and stress can wear us out, and being at peace is the least tiring way to live.  For almost everyone, fatigue eventually goes away. For me, as long as I keep cool, it no longer bothers me, and I’m very thankful for that.

 

What’s New in MS Research

The Multiple Sclerosis Association of America (MSAA) is pleased to present its latest edition of “What’s New in MS Research.” This series of online articles is published periodically and features important information on topics ranging from highlights of major international MS conferences and updates on trials with experimental disease-modifying therapies, to new findings on the development of the disease, symptom management, and quality-of-life issues.

This latest edition of “What’s New in MS Research” features trial results from recent studies as well as updates on a variety of MS-related issues. Topics include:

• Positive results for the investigational treatment ublituximab
• The importance of identifying anxiety and depression in early MS
• Intriguing results with cannabis for bladder symptoms with MS
• Assistive devices that show the greatest strides
• And many other vital topics

Please read MSAA’s latest edition of "What’s New in MS Research." We hope you find these updates to be both informative and encouraging, providing help and hope to the entire MS community.

For additional information on the latest advancements in MS research, please also see MSAA’s archived educational webinar What’s New in MS Research: A Look Into the Future of Multiple Sclerosis Treatment — July 2021 featuring neurologist Barry Singer, MD.

 

MS Slide Show

 Interesting slide-show from WebMD -

https://www.webmd.com/multiple-sclerosis/ss/slideshow-multiple-sclerosis-overview?ecd=wnl_spr_070621_remail&ctr=wnl-spr-070621-remail_lead_cta&mb=q80%2F%40kIeuyYKtyaYzOxdbc6RVoMqf%400VkpmvpK5yEEQ%3D