April 30, 2021 Columns by Ed Tobias What Do the Oscars and Our COVID-19 Response Have in Common? What could the Academy Awards and COVID-19 possibly have in common for people with disabilities? Stay tuned, and I’ll tell you. First, the Academy Awards. The documentary “Crip Camp,” about a summer camp for young adults with disabilities, was up for an Oscar. Its co-director and co-star, Jim LeBrecht,…
April 16, 2021 Columns by Jamie Hughes The Value of Looking Ahead Next week, I will be celebrating my second āquarantine birthday,ā which is both amazing and sad. I honestly had no idea weād still be dealing with COVID-19 for more than a year, and what a strange and perplexing time it has been. I think the thing that has hit me…
January 15, 2021 Columns by John Connor My ‘Great Escape’ During a Long Pandemic Unfortunately, mine didn’t involve a cool motorbike ā it was the wrong kind, as somehow Steve McQueen had managed to steal a British one ā and an impossible jump at barbed wire to get into Switzerland! I’ll now never be able to get onto a motorbike anyway. Instead, it…
December 16, 2020 News by Joana Carvalho, PhD US Patients Urged to Enroll in STEP for MS Trial Assessing 2 Exercise Programs Adults with mild to moderate multiple sclerosis (MS) are being urged to participate in a new clinical trial ā STEP for MS ā that will assess the impact of two different exercise programs on patientsā mobility, walking abilities, and quality of life. Funded by the Patient-Centered Outcomes Research…
December 14, 2020 News by Diana Campelo Delgado Sanofi Enrolling for 2 GEMINI Trials Testing Tolebrutinib vs. Aubagio for Relapsing MS Two global Phase 3 clinical trials, both comparing Sanofi Genzymeās investigational tolebrutinib with its approved therapy Aubagio, are enrolling a total of 1,800 people with relapsing multiple sclerosis (MS), the company said. All patients in both studies ā dubbed GEMINI 1 and GEMINI 2 ā will…
December 11, 2020 Columns by Ed Tobias Can I Get a COVID-19 Vaccine If I Have MS? Do you plan to get a COVID-19 vaccine? I do.Ā One is now available to some residents of the U.K., and approval in the U.S. of one or more likely will happen soon. Though the U.S.-based National Multiple Sclerosis Society has said only that people with MS should consider…
December 4, 2020 News by Joana Carvalho, PhD Nonprofit Surf & Turf Therapy Seeks Donations to Extend Services to More People Surf & Turf Therapy, a nonprofit organization that aims to improve the quality of life of those with disabilities through non-conventional therapeutic activities, has launched a donation driveĀ to help the organization extend its services to more people. The nonprofit led by Jillian Stewart, a licensed physical therapist,…
November 23, 2020 News by Marisa Wexler, MS ChariotMS to Test Mavenclad in SPMS, PPMS Patients With Little Ability to Walk An upcoming Phase 2 clinical trial, called ChariotMS, will test whether Mavenclad (cladribine) can slow a worsening of hand and arm function in people with progressive multiple sclerosis (MS) and very limited walking abilities. Patients reliant on wheelchairs or aids to walk even short distances generally have…
November 20, 2020 Columns by Ed Tobias Travel During COVID-19: Should We Stay or Should We Go? The temperature’s dropping. The wind is whipping. It’s time for my wife, Laura, and me to head south, leaving cold, uncomfortable Maryland for the welcoming warmth of southwest Florida. Or is it? Though I once swore I’d never become a snowbird, a few years ago, we spent a week on…
November 16, 2020 News by Marisa Wexler, MS New MS Trust Funding Will Help Improve Patient Support During Pandemic The U.K.’s MS Trust has been awarded Ā£50,000 (about $65,800) from the Coronavirus Community Support Fund ā distributed by The National Lottery Community Fund ā to further its “Supporting the MS community during Covid-19” project. Expected to run for six months, the project aims…
November 13, 2020 Columns by Ed Tobias MSIF Issues New Recommendations to Protect Against COVID-19 The Multiple Sclerosis International Federation (MSIF) has issued new recommendations about how people with MS should adjust their daily lives because of the coronavirus pandemic. The MSIF, a network of national MS societies from around the world, first issued COVID-19 recommendations last spring. But much has been learned…
November 2, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Biotin, Opicinumab, Myelin, Tele-exercise MD1003 Fails to Prevent Disability Progression in Progressive MS Patients, Trial Shows This is discouraging news for people taking high-dose biotin, many who have been buying it over the counter. Not only do these researchers report that taking 100 mg of biotin (MD1003) three times a day failed to…
October 23, 2020 Columns by Ed Tobias Diagnosing MS During a Pandemic: UK vs. US Editor’s note: Previously, this piece stated that Dr. Ide Smets theorized a transition to telemedicine as the standard of care could cause decreased life expectancy in the U.K. of up to 30 years. The piece has been corrected to state that such a change could result in a decreased life…
October 5, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Amalgam Fillings, COVID-19 and MS, Tecfidera Generic MS Patients Should Avoid āSilverā Tooth Fillings Due to Mercury, FDA Advises Concerns about the possible danger of amalgam dental fillings have been floated for years. Several European countries already have banned their use in certain cases. Now, regulators in the U.S. have taken a small step in that…
October 1, 2020 News by Joana Carvalho, PhD #MSVirtual2020 – Disability Level and DMT Use Don’t Raise COVID-19 Risk, UK Study Finds When safety measures like isolation are in place, neither disease-modifying therapy (DMT) use nor greater physical disability appear to heighten the risk of people with multiple sclerosis (MS) contracting COVID-19, a large U.K. registry-based study found. Preliminary study data also suggested that these factors do not affect…
September 30, 2020 News by Joana Carvalho, PhD #MSVirtual2020 – Rituximab, Ocrevus Linked to Higher Risk of Worse COVID-19 Outcomes The use of certain disease-modifying therapies (DMTs) such asĀ rituximabĀ andĀ Ocrevus (ocrelizumab), which lower the number of a patient’s immune B-cells,Ā may increase the odds of developing a more severeĀ COVID-19 disease course for people withĀ multiple sclerosis (MS), a study suggests. The study, which includes data from the…
September 24, 2020 Columns by Jennifer (Jenn) Powell Restarting Rituxan: One Down, and a Lifetime to Go Last week, I again started my twice-annual infusion of Rituxan (rituximab). After 384 days without my disease-modifying therapy, my team decided I could no longer wait. In its absence, my symptomology had worsened. Halting progression trumped a pandemic, and with personal protective equipment in place, I begin…
September 14, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: COVID-19 Survey, MSVirtual2020, Zeposia, B-cells COVID-19 Pandemic Had Minimal Emotional Impact in Progressive MS Patients, Survey Finds I beg to differ. I have secondary progressive MS, and COVID-19 has bummed me out. I haven’t been in an exercise room since May. My wife and I haven’t had a meal in a restaurant since late…
September 11, 2020 Columns by Ed Tobias Why a Flu Shot Is More Important Than Ever This Year Labor Day has come and gone here in the U.S. Now, flu season has arrived in the Northern Hemisphere. This isn’t the novel coronavirus we’ve been fighting all year. It’s the regular seasonal flu virus that’s knocking on our door again. Each year, some people with multiple sclerosis (MS)…
September 9, 2020 News by Marta Figueiredo, PhD COVID-19 Pandemic Had Minimal Emotional Impact in Progressive MS Patients, Survey Finds While theĀ COVID-19 pandemic had an impact on the psychological well-being of people with progressive forms of multiple sclerosisĀ (MS), it led to minimal changes in depression, anxiety, and quality of life, according to data from an international survey. This was true even for the 4% of patients who reported…
July 31, 2020 Columns by Ed Tobias Lemtrada and COVID-19: To Treat or Not to Treat? Like others these days, I’m worried about COVID-19. In fact, I’m probably more worried than some. I’m old, I have MS, and I’ve been treated with the disease-modifying therapy Lemtrada (alemtuzumab) ā a trifecta of potential trouble. Lemtrada suppresses part of the immune system. It’s one of the…
July 27, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Ketamine, Arbaclofen ER, Bafiertam, UK Health Services Ketamine May Help Treat MS-related Fatigue, Small Pilot Trial Suggests I’m tired ā I mean really bushed. Today, despite my daily dose of modafinil, I have to sit and think, “What was I starting to do?” before doing it. (I had to look at a list on my phone…
July 23, 2020 News by Joana Carvalho, PhD UK Health Services Failing MS Patient Needs Under Pandemic, Survey Finds A vast majority ā 7 out of every 10 ā healthcare professionals working with multiple sclerosis (MS) patients across the U.K. believe health services are failing to meet their needs throughout the COVID-19 pandemic, according to an online survey conducted by theĀ MS SocietyĀ and the MS…
July 20, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: COVID-19 Website, Testing MS Progression, RIS, Alternative Treatments MSAA Opens āCOVID-19 and MS Pathfinderā Online Informative Platform Information about MS and COVID-19 is dynamic and regularly changing. This has been particularly true about how to handle disease-modifying therapies (DMTs). The website mentioned in this story tries to keep up with these changes while covering multiple subjects ranging…
July 16, 2020 News by David Melamed, PhD MSAA Opens ‘COVID-19 and MS Pathfinder’ Online Informative Platform The Multiple Sclerosis Association of America (MSAA) teamed withĀ Wondros, a creative production company, to launchĀ COVID-19 and MS Pathfinder, an onlineĀ platform offering theĀ multiple sclerosis (MS) community accurate and regularly updated information to help in safely navigating the COVID-19 pandemic. Topics covered range from managing MS symptoms…
July 15, 2020 News by Forest Ray PhD Vital Neurological Care Missing During Pandemic, UK Survey Finds The ongoing COVID-19 pandemic is disrupting vital care and support for those with neurological disorders like multiple sclerosis (MS), according to a recent report from the Neurological AllianceĀ in the U.K. The report is based upon survey responses from over 1,600 people with neurological conditions in that…
July 6, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Wearable Sensors, COVID-19, Tecfidera PROTXX, University of Alberta Collaborate to Develop Remote Healthcare Platform for MS Patients As more and more neurologists turn to telemedicine for routine patient visits, I expect we’ll see more of the type of technology being developed here. This group is working on something that goes further than what…
June 26, 2020 Columns by Ed Tobias Updating the Shifting MS-COVID-19 Treatment Equation It’s been a few weeks since I’ve written about the impact that COVID-19 is having on people with MS. Since then, the picture has changed ā not a lot, but enough for the MS International Federation to modify its recommendations for that illness, people with MS, and…
June 24, 2020 News by Marisa Wexler, MS University Study of Falls During COVID-19 Enrolling Patients for Online Survey A studyĀ aiming to better understand falls and fall-related injuries in people with multiple sclerosis (MS) and other neurological disorders while self-isolating during the COVID-19 pandemic is recruiting participants. The online study, largely in the form of a questionnaire, is being carried out by the Motor Control Research…
June 22, 2020 Columns by Ed Tobias MS News That Caught My Eye Last Week: Gilenya and COVID-19, Depression, Switching from Tysabri Gilenya May Help Control Severe Respiratory Disease in COVID-19 This story caught my eye, but not because of the possibility that Gilenya may help someone recover from COVID-19. It caught my eye because this information may give false hope to some people. Some doctors think that at a…