Breaking MS Research from MSVirtual2020
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Welcome to the newest edition of The Hunker Games. Dave and his wife Laura of ActiveMSers are hunkering down in isolation for the duration of the coronavirus pandemic—these are their stories (cue the L&O dong-dong) ... along with helpful advice, necessary levity, and, most crucially, hope.
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Greetings, apologies for not writing sooner! There’s a lot going on in the MS research space. And it is so crucial, you need to dispense with all distractions and pay attention. Seriously. Normally right now I would verge off into a humorous story of how I nearly got mauled by a vicious peacock. Or share my cautionary tale of navigating a wheelchair-accessible drug-smuggling tunnel. Or gush about the imminent arrival of my new e-handcycle that is cooler than James Bond milking multiple martinis in Monaco while making macramé mobiles. Okay, said aloud, that’s more dorky than cool, but you get my drift. Alas, there’s no time for any of that fun stuff in this edition of The Hunker Games. Instead we are diving into the discoveries from the two largest MS research conferences, ACTRIMS and ECTRIMS, which combined this year for one single event: MSVirtual2020. The most critical research findings—note that not all studies have been peer-reviewed—are posted in our forums, which makes it a perfect place for discussion and debate. Before you go there and poke around, which I highly recommend, here are the quick highlights.
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// DMT FINDINGS: Hit MS Early ... and Hit it Hard
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Researchers have found that largely irreversible axonal degeneration due to MS is fastest in the earliest stages of the disease, and its destruction is ominously silent: no relapses, no MRI lesions. Another study found retinal and brain damage is key in the first five years, “which reinforces the use of an early intensive anti-inflammatory therapy to prevent neurodegeneration in MS.” The model of starting with a conservative therapy before going with the big guns now appears to be outdated; an aggressive approach is far more effective at controlling disability. The journal Lancet confirmed those findings. “High-efficacy therapy commenced within 2 years of disease onset is associated with less disability after 6–10 years than when commenced later in the disease course.” And it’s not just relapse-remitting disease. This study found that PPMSers who took DMTs may delay time to a wheelchair.
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TIP: I’m often asked how I dig up the most accurate and dependably reliable MS information on the internet. After doing it for the past 15 years, I’ve put together an indispensable guide of best multiple sclerosis resources for ActiveMSers. It includes the best organizations, conferences, Twitter feeds, YouTube channels, research blogs, MS journals, and more. I even highlight the best Facebook pages, and what I recommend might shock you (or not). BEST MS RESOURCES: THE GUIDE
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// MS FATIGUE: New Research Discovers What Works, What Doesn't
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Unsurprisingly, MSers struggle with fatigue, so much so that this study found that they would trade relapses and disability for a reduction of this debilitating symptom. What to do? DRUGS! Nope. In a randomized trial of popular fatigue-busting meds, all failed to best a placebo and worse, there were notable adverse events. DIET! Hmm. “Overall diet quality was not associated with a subsequent change in depression, anxiety or fatigue over 5-years.” WAIT, say dieters! Another study found the Wahls Protocol “may” have an effect. But there are issues. One: that study was conducted by Dr. Wahls. Two: other just-published studies found that only 2-3% of MSers could adhere to her diet for any length of time. Which might be notable except for the fact that those studies were published by promoters of a competing diet! ¯\_(ツ)_/¯ Well, what about EXERCISE for fatigue! Shocker. Like dozens of previous studies, this newest one found circuit training resulted in “significant improvement” in fatigue and walking. If fatigue is a frustrating symptom for you, this is the only “treatment” that has shown consistent and durable success in combating MS fatigue. (To learn how to get started, see our newly revised MS EXERCISE GUIDE.)
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// BONUS: HIIT, Cooling Vests & New Hope for Progressive MSers
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How’s that for a grab bag of fun?! First off, a study of high intensity interval training found that HIIT reduced subclinical inflammation in MS. (For more on HIIT, see our HIIT guide.) Then there was this cooling vest study that found MSers could walk substantially farther and longer with a cooling aid. (For more on cooling vests, see our guide.) Finally, a new drug still in development—Masitinib—showed real promise in a Phase 3 study, reducing the risk of first disability progression by 42%.
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If this is a lot to take in right now, I’m sorry. But I just want to impress upon all of you how important your treatment choices are when you have multiple sclerosis. All medical decisions you make today likely will impact you for a lifetime, and it is essential that you get the straight facts. Now, researchers did come up with other findings that you’ll find heartening, especially during this mentally challenging time of Covid, endless lockdowns, and for those in the US, an extremely unsettling political climate combined with a now-ill president. Resilience matters. Several newly published studies found that looking “beyond disability is important for the improvement of quality of life in patients with multiple sclerosis” and that higher resilience to MS-related challenges was related to “lower neuroticism, higher extraversion and conscientiousness, and to a lesser extent, agreeableness.” I’d say that fits me. I’m not too neurotic, pretty darn extroverted, and usually agreeable, unless you want to put pineapple and ham on a pizza WHICH IS AN ABOMINATION OF EPIC PROPORTIONS. I want to conclude with a final research finding: social support is associated with “overall psychological health and motor functioning in persons with MS.” I’m lucky to have an army of good friends, and I consider you one of them, even if we’ve never met IRL. Naturally, a new count estimates there are now 2.8 million MSers worldwide, so my friendship pool might be getting a bit bigger as folks discover us. Like an ocean bigger! Gulp. Be active, stay fit, and keep exploring!
Sincerely,
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Dave Bexfield
p.s. We hope you enjoy the fresh new design of our newsletter. It might take a moment to register as the same old Dave, but it’s all me, only with a new (wife-approved) outfit.
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be active - stay fit - keep exploring
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