with reports from final day the meeting; Originally posted 9/22
MS research progress hasn’t stopped because of the pandemic. Results from recent clinical trials, research on myelin repair, gut bacteria, and racial/ethnic disparities were among the 50 scientific sessions and 1,100 e-poster presentations made at the world’s largest MS research conference. MSVirtual2020 was jointly organized by the Americas and European Committee for Treatment and Research in MS (ACTRIMS and ECTRIMS). Nearly 8,000 researchers, clinicians, research fellows, and industry representatives from around the world gathered virtually in mid-September to share their research progress.
Advances were reported from many different avenues of research, driving breakthroughs to cures that will stop MS
what’s been lost and end MS
forever by prevention. Below are only a few highlights of many important presentations in these categories. Usually study results presented during conferences like this are considered preliminary until they are published in peer-reviewed journals.
Many presenters shared results on the continued benefits of available therapies, and data showing that early and ongoing treatment with a disease-modifying therapy has long-term benefits for controlling disease activity, delaying buildup of disabilities, and protecting quality of life.
Researchers are exploring whether reducing dosages or dosage intervals of some highly effective therapies can maintain benefits while reducing the risk of serious side effects. Several studies also reported on efforts to determine how to predict an individual’s disease course and progression to guide better treatment decisions, including the development of biomarkers like imaging techniques, wearable sensors, and blood markers like neurofilament light and glial fibrillary acidic protein.
UPDATE: Impacts of COVID-19 in MS
MS researchers around the globe moved quickly to collect information about how people with MS who get COVID-19 fare and whether disease-modifying therapies impact the outcomes of COVID-19.
Learn more about MS and COVID-19
Read about MS treatment during COVID-19
- Who gets more severe COVID-19?
- Dr. Steve Simpson-Yap (University of Melbourne, Australia) presented findings from the COVID-19 & MS Global Data Sharing Initiative launched by the MS International Federation and the MS Data Alliance, involving 20 data partners from throughout the world contributing information on outcomes from 1500 people, including those in the COViMS registry noted below. So far the findings echo what’s seen in the general population, with people who are older and those with higher levels of disability being more likely to experience a more severe course of COVID-19. They found no evidence that being on a disease-modifying therapy increased the risk of dying from COVID-19. They reported that people taking anti-CD20 therapies (Rituxan or Ocrevus) tended to have more severe cases of COVID-19, but other studies have not found this association. (Presentation SS02.04)
NOTE: It is not yet known whether treatment with these medications actually causes these poorer outcomes. If you are concerned about how your MS disease modifying treatment might affect the outcomes of COVID infection, please contact your health care provider to discuss your options.
- Dr. Amber Salter (Washington University, St. Louis) presented results from the COViMS North American registry, which is supported by the Consortium of MS Centers, MS Society of Canada, and the National MS Society. The team has found that, even when correcting for known risk factors such as comorbidities, Black people with MS tend to have more severe COVID-19 than White people with MS. This suggests that multiple factors are contributing to these outcomes. This has also been found in the general U.S. population. Further research to understand these disparities should be prioritized. (Presentation SS02.02)
- Changes in activity, routine care, treatment: Many surveys have been conducted to understand how behaviors of people living with MS may have changed during the pandemic.
- From an April 2020 survey of people with MS seen at the Corinne Goldsmith Dickinson MS Center at Mt. Sinai (New York), many mistakenly believed that having MS made them more susceptible to COVID-19 infection. Most postponed office visits, lab work and MRIs, but continued taking their disease-modifying therapies. (Poster LB1149)
- A University of California, San Francisco team investigated how individuals they regularly follow with wearable step trackers were changing their physical activity during lock-down. As expected, daily steps declined, but activity resumed later in some but not all participants, raising concerns that reduced activity imposed by shelter-in-place orders may have longer-term negative impacts on wellness. (Poster LB1144) Read more about ways to stay active
- Positive trial of Masitinib in progressive MS: Dr. Patrick Vermersch (Universite de Lille, France) presented first details of a positive clinical trial of masitinib (by AB Science) in primary progressive MS and “non-active” secondary progressive MS. Masitinib is a “tyrosine kinase inhibitor” that targets biochemical activities in immune cells that are largely involved in the innate immune system, which is thought to be a driving force within the brain and spinal cord in progressive phases of MS. Two doses were compared to placebo over 96 weeks. The lower dose reduced the risk of progression on the EDSS disability scale by 37% compared to placebo. Other measures of disability progression were also reduced. Results from earlier studies suggest masitinib is relatively well tolerated. The most common yet rare possible side effects were weakness, rash, nausea, fluid retention, and diarrhea. (Presentation FC04.01)
- Targeting Epstein-Barr virus: Dr. Amit Bar-Or (University of Pennsylvania) presented for a multicenter team of researchers who conducted an open-label, first part of a phase 1 safety and dose-finding clinical trial of an immune therapy (ATA188, Atara Biotherapeutics) that targets immune cells infected with the Epstein-Barr virus, which may be involved in the cause or triggering of MS. In this small study involving people with progressive MS, some participants achieved improvement in disability scores, and there were no major safety issues. Based on these promising results, the team is proceeding with the second part of the phase 1 trial. (Poster P0226)
- Hit MS hard first? Several presentations during the conference added to growing evidence that early, aggressive treatment of MS may be more effective against disability in the long term compared to gradual escalation to stronger treatments over time. Dr. Ellen Mowry (Johns Hopkins University) surveyed what’s known so far, and described ongoing clinical trials -- TRaditional versus Early Aggressive Therapy for MS (TREAT-MS) and Determining the Effectiveness of earLy Intensive Versus Escalation Approaches for RRMS (DELIVER-MS), designed to settle the question. (Presentation PS01.01)
- “Metabolic syndrome” and MS progression: Dr Ruth Ann Marrie (University of Manitoba) reviewed what’s known about how having “metabolic syndrome” impacts the course of MS. This syndrome involves having any one or more of conditions that increase the risk of heart disease, stroke and diabetes (such as high blood pressure, high blood sugar, excess body fat around the waist, and abnormal cholesterol levels). These conditions can delay MS diagnosis, increase relapse rates, speed progression, and increase mortality. Obesity in particular may alter the effectiveness of MS therapies. She noted a small study showing that treating these conditions may reduce MRI-detected MS disease activity, but that more research is needed to confirm, and to determine how to best handle disease modifying therapies in the presence of obesity. (Presentation PS04.0)
Download a checklist of preventive care recommendations
Research is proceeding worldwide to understand how the bacteria, fungi, and viruses that populate the gut (microbiome) influence the immune system and the brain and spinal cord in MS.
- Where we are: Dr. Emmanuelle Waubant (University of California, San Francisco) reviewed findings, including her own research involving children with MS. Researchers are finding that gut bacteria are influenced by age, geographic location, diet and supplements, and medications. While there have been reports of over-abundance or under-abundance of specific bacteria in the gut, it is a complex picture and scientists are now looking at what biological pathways they may be interacting with or influencing. Small-scale trials are underway of probiotic supplements and fecal transplants that may pave the way for larger studies attempting to alter the gut microbiome as a disease-modifying therapy. (Presentation PS10.01)
- International MS Microbiome Study: A poster presented by Dr. Xiaoyuan Zhou (University of California, San Francisco) described early results from the International MS Microbiome Study, which is a collaboration established to nail down the role of gut bacteria in MS susceptibility, disease activity, and response to treatment. They have been enrolling people with MS, matched with a healthy household member, in the U.S., South America and Europe. Results focusing on 576 pairs have shown differences in the diversity of gut bacteria between people with MS and healthy controls, but variations in microbiome are largely affected by geography. Treatment with disease modifying therapies appears to normalize the microbiome. (Poster P0671)
An important area of research into stopping MS focuses on how the disease impacts different populations. The National MS Society has been supporting such studies for decades. Recent investments in this area total more than $4 million in multi-year commitments. Results are emerging that will raise awareness that MS impacts people differently, and will improve care.
- Minorities in clinical trials: Helen Onuorah and team (The University of Texas at Austin) looked at how minority participation is reported in published phase 3 trials for approved disease-modifying therapies. Among 46 phase 3 trials reviewed from 1995 to 2020, only 29% reported detailed information on race. Pharma company websites had no information about results of their therapies in racial minorities. Racial minorities were underrepresented as participants in the majority of trials. Understanding if and how therapies impact people of different races differently is critical to making informed treatment decisions. (Poster P0419)
- Dr. Mitzi Williams (Morehouse School of Medicine, and member of the Society’s Board of Directors) described a new clinical trial called CHIMES that is specifically testing the safety and efficacy of Ocrevus in African Americans and Latinx who have relapsing MS because minority participation in the trials that led to its approval was less than 10% of all participants. This study is an important advance toward gaining information on the safe use of this therapy in racial minorities. (Poster P0242)
The National MS Society has worked with the MS Minority Research Engagement Partnership Network
to better understand why racial and ethnic minorities aren’t fully represented in research and to develop solutions to encourage participation.
- Mining health databases: With a pilot research grant from the National MS Society, Dr. Aaron Carlson has been delving into health databases to tease out demographic information about people with MS in Florida. In addition to prevalence data, he has found that racial minorities were more likely to receive any prescription for an MS disease-modifying therapy, but that whites were more likely to be prescribed more highly effective therapies, suggesting a disparity in care that needs investigation. (Poster P0485)
- Mining data from the nationwide NARCRMS (North American Registry for Care and Research in MS) registry, Dr. Victor Rivera (Baylor College of Medicine) confirmed prior research suggesting African Americans were more likely to experience more severe disability than non-Hispanic whites. He also reported that Hispanic/Latinx people with MS were less likely to be taking a disease-modifying therapy. (Poster P0494)
Nervous System Repair
Researchers reported advances in understanding the complex biological mechanisms behind how myelin is repaired after damage by MS, and how to promote repair when it stalls. Two basic strategies entail accelerating the body’s natural repair processes and transplanting cells to promote repair. There are more and more clinical trials testing different approaches to protect nerve fibers from damage and to promote myelin and nervous system repair.
During the late-breaking news session, Dr. William Brown (University of Cambridge, United Kingdom) presented the first results from a placebo-controlled phase 2 clinical trial of a myelin repair candidate called bexarotene, a drug approved for a form of skin cancer that interacts with a docking site called the Retinoid acid X receptor (RXR) on cells with myelin-making potential. The trial did not meet its primary outcome measure related to myelin changes within MS lesions, but the team found other hints that myelin repair may have increased compared to those on placebo. All 20 participants receiving bexarotene had significant side effects, making it unsuitable as a myelin repair strategy in MS. Dr. Brown noted that developing a therapy that more specifically targets the RXR receptors involved in myelin repair may reduce side effects. (Presentation LB01.02
Charcot Symposium focused on myelin repair:
Lectures that made up the Charcot Symposium, which is a special session traditionally held at the ECTRIMS meeting, focused this year on myelin repair.
- “Remyelination is a very active area of research,” said Dr. Catherine Lubetzki (Hôpital Pitié-Salpêtrière, France) as she reviewed current repair approaches. She noted evidence that electrical activity of nerves stimulates myelin repair, and that a new clinical trial is getting underway in France in people with optic neuritis, myelin damage that is often a first sign of MS. (No Abstract - Read about the trial on ClinicalTrials.gov)
- Dr. Robin Franklin (University of Cambridge, United Kingdom) discussed that myelin repair can fail as MS becomes chronic, and why the aging brain is less amenable to myelin repair. Recently his team has found that the brain stiffens with age, which can inhibit the intrinsic progenitor cells that are part of the body’s repair mechanisms. In lab models, they have experimented with ways to make progenitors fail to recognize brain stiffness, which seems to get them back on the repair track. (No Abstract)
- Dr. Gianvito Martino (San Raffaele Scientific Institute, Italy) is advancing cell-based approaches to promote myelin repair. He previously showed in mice that transplanted neural stem cells can produce factors that reduce inflammation, promote myelin repair, and slow down nerve degeneration, and is now leading a human phase 1 safety trial. Twelve participants with progressive MS have been injected each with three doses of cells. Dr. Martino reported that so far, he has not observed any serious adverse events, and also reported that the transplanted cells have survived at least 3 months. While the study is mostly designed to demonstrate safety, reduced signs of inflammation in the spinal fluid was also reported. (No Abstract)
MS symptoms are variable and unpredictable, they can change or fluctuate over time, and can have profound impacts on function and quality of life. Many MS symptoms can be managed with rehabilitation, medications, and wellness strategies. Learn more about managing symptoms
- Physical therapy neglected: Dr. Valerie Block and team (University of California, San Francisco) asked whether women with MS were using physical therapy (PT)to address symptoms during pregnancy or one year after childbirth. Among 142 women, 107 reported a symptom – such as urinary incontinence – that could be addressed by physical therapy. Only 30 were referred to PT, and only 10 actually attended. Only 5% of the women were referred for pelvic floor PT, a mainstay treatment for bladder symptoms. This research points to a critical gap in pregnancy/postpartum care. Bladder and bowel symptoms can prevent you from fully interacting with community, friends and family - it doesn’t need to be that way. (Poster P1113)
- Impact of multiple medications: Taking several drugs at the same time can have adverse effects in older individuals. Joanie Thelen, MA (University of Kansas) and team studied whether “polypharmacy” -- defined as taking 5 or more meds concurrently – was linked to more pain, fatigue, and mood changes in older people with MS. They examined medication lists and questionnaires from 50 people with MS and 55 people without MS. People with MS were taking more medications, and the number of daily meds correlated with increases in fatigue, pain, and depression. Antidepressants, anticonvulsants, and stimulants were more commonly prescribed in MS. The team suggests that healthcare providers do a medication review in people with MS who report pain, fatigue, and mood symptoms. (Poster P0458)
- Testing breathing during sleep: Dr. Elisabeth Maillart and team (Pitié-Salpêtriere Hospital, France) performed a novel study of breathing disorders during sleep in 71 people with advanced MS. These disorders can be dangerous but are difficult to diagnose when people’s mobility and cognition are affected. During-sleep tests showed that 70% had respiratory disorders of several varieties, mostly dysfunction of the diaphragm. This highlights the frequency of breathing disorders in this population and the need for multidisciplinary care, such as respiratory therapy or vaccination against lung infections. (Presentation FC04.04)
Read more about improving breathing
- Dietary Approaches to fatigue: Dr. Terry Wahls (University of Iowa) and colleagues presented preliminary results from a National MS Society-funded, 36-week controlled clinical trial studying the impacts of the Swank (low fat diet) and the Wahls Elimination Diet (modified paleolithic) on measures of fatigue and other physical and mental health tests in 77 people with relapsing-remitting MS and fatigue. The primary outcome measured was impacts of both diets on the Fatigue Severity Scale (FSS), a standard, self-reported clinical measure of fatigue. Results showed that both groups had significant reductions in the FSS compared to the start of the study. Both diets showed improvements in other measures including another fatigue scale (the Modified Fatigue Impact Scale – MFIS), physical and mental quality of life, information processing speed, and walking distance. The Wahls diet was better at reducing fatigue on the MFIS scale but not the FSS and improving mental health quality of life scores than the Swank diet. When the results of this Society-funded study are published in a peer-reviewed journal, it will improve our understanding of the impact of diet on MS symptoms. (Poster P0208)
Ending MS – which can be defined as there being no more new cases of MS – will take a deeper understanding of risk factors and triggers, and methods to detect or predict MS well before its onset. Many presentations focused on known risk factors such as MS-related gene variations, childhood obesity, exposure to Epstein-Barr virus, low vitamin D, and smoking, and understanding the biological mechanisms behind how these factors may trigger immune system malfunctions that lead to MS. Read more about MS risk factors
Browse presentations, brief summaries (abstracts) and posters
- The MS Prodrome: The keynote talk focused on the “MS Prodrome” – the phase before classic MS symptoms occur – indicating an increased recognition that we may learn to stop MS at its earliest stages, and identify people who are at high risk for developing MS, and perhaps treat the disease before any clinical signs become apparent. Dr. Helen Tremlett (University of British Columbia, Canada) reviewed what’s been reported to date on the MS prodrome. It includes patterns of health visits, vague symptoms, and issues with bladder, depression, cognition, fatigue, headache, pain, skin, anemia, and gastrointestinal complaints, occurring from months to up to ten years before classical MS symptom onset. “If we could recognize it earlier, we could prevent disability,” she said. (Presentation PL01.01)
- Global prevalence of MS: An updated survey of MS around the world was unveiled at the conference, revealing that there are now 2.8 million people worldwide who have MS. Nearly 1 million of them are living in the U.S.. The newly updated Atlas of MS, an effort led by the Multiple Sclerosis International Federation with funding from the National MS Society and others, reveals that the number of people living with MS has increased in every world region since 2013. Having reliable data on who gets MS, and where, will help identify possible clusters that may hold clues to what triggers MS. Read more
- Smartphones to detect pre-MS: Dr. Mikael Cohen and colleagues (CHU de Nice, France) asked whether digital biomarkers collected by a smartphone app could distinguish 16 people with radiologically isolated syndrome (RIS) from 50 healthy controls. RIS is a rare phenomenon where some people who undergo brain MRIs are found to have MS-like lesions without MS symptoms. The team created a mobile app called MS Screen Test that measures finger tapping speed, vision, and cognition. The app uncovered deficits in some people with RIS that were not apparent on clinical examination. This is one example of many teams using advanced technology to define the hidden signals and biological markers of the MS prodrome. (Poster P0034)
- Ozone and MS: It’s thought that investigating MS risk factors in children offers a better opportunity to discover triggers closer to their origin than in adults. Dr. Amin Ziaei (University of California, San Francisco) and members of the National MS Society-supported US Network of Pediatric MS Centers previously reported a link between air pollution and the risk of pediatric MS. Now, in a study of 355 pediatric MS cases and 565 controls, they have uncovered a link between MS and a specific air pollutant, ozone, using recorded county-based ozone levels. Risk of MS with ozone exposure was increased in those who also had a gene variant that increases susceptibility to MS (DRB1*15). Further work is underway to understand mechanisms behind this link. (Presentation PS04.04)
from the meeting.