My 5 wishes for the future of multiple sclerosis

Prevention, remyelination, and stem cell treatments are among my priorities

by Ed Tobias | May 12, 2023

A recent post on the MS-Selfie blog asks and answers this question: What is the “greatest unmet need” concerning multiple sclerosis (MS)?

Professor Gavin Giovannoni, the London-based neurologist who writes that blog, lists five unmet needs, many of which I agree with. But those needs are from the viewpoint of someone who treats MS. Here are some thoughts from someone who has lived with MS for nearly 43 years.

They’re my wishes for the future.

No. 1: Prevent MS

This priority is the same as Giovannoni’s top unmet need. If I look at things from a global perspective, with the needs of many trumping my own, there’s no contest. The MS community needs to be more proactive about prevention.

More than 20 disease-modifying therapies (DMTs) are available to slow or stop MS relapses or progression, but there’s nothing available to vaccinate against the illness. The closest is research to find a vaccine to prevent the Epstein-Barr virus (EBV), which is thought to be a strong risk factor for developing MS.

Our treatments for multiple sclerosis aren’t cures, but vital time-buyers

About a year ago, the U.S. National Institutes of Health (NIH) launched a Phase 1 study to develop an EBV vaccine, giving all such research a big-time push. Moderna, the pharmaceutical company that developed a COVID-19 vaccine at lightning speed, is also sponsoring a clinical trial, using the same mRNA technology as the company’s COVID-19 vaccine.

Others also have research underway. It probably won’t help me, but this research could help millions of others who might, one day, be protected against both EBV and MS.

Do you agree that prevention should be MS job No. 1?

No. 2: Mend my myelin

To me, myelin means motion. Repair the MS-damaged myelin that coats my nerves, and those nerves might regain their ability to carry the impulses that MS disrupts. That could result in an improvement in my MS symptoms, I hope.

Researchers are studying several experimental remyelination treatments, including CNM-Au8, PIPE-307, and XPro1595. I hope at least one of those studies will lead to an approved therapy.

Am I hoping for the impossible?

No. 3: Approve stem cell transplants

What’s the deal with this? Stem cell transplants to treat MS have been available in Mexico, Russia, the U.K., and elsewhere for years. But they either cost thousands of dollars — not covered by most insurance — or they’re severely limited by government health policies. For people with MS in the U.S., there are only clinical trials.

Late last month, MS News Today published a story about 22 patients who received an autologous hematopoietic stem cell transplant (aHSCT) at a center in Mexico. After two years, all 22 met NEDA3 (no evidence of disease activity 3) criteria. After seven years, 16 of them were still at NEDA3.

The U.S. National Multiple Sclerosis Society believes that “aHSCT is a good treatment option for some people,” particularly those with very aggressive relapsing-remitting MS for whom DMTs have failed.

Six years ago, I wrote that “scientists have been studying stem cell treatments for years and it sure seems as if we’re still crawling when we should be cruising.” The MS community has picked up a little speed, but I don’t think it’s moving fast enough.

Do you?

No. 4: Improve everyone’s MS knowledge

Most people just don’t get it. Most friends, family, co-workers, too many neurologists, and even some people with MS don’t really understand MS. As someone who has lived with it since 1980, has written this column for almost seven years, and has published a book about it, I’m aghast at the lack of MS knowledge I see every day.

We need to have better outreach for education, including in medical schools, about the impact MS has on people’s lives and how people with MS can be helped to deal their disability. I’m trying to do my small part, but as my late father-in-law — an avid sailor — used to say, it’s like shoveling s*** against the tide.

Anybody have any suggestions?

No. 5: Hit it hard, hit it fast

When I was diagnosed, there were no DMTs. How I wish there had been. I jumped at the chance to participate in a Phase 3 clinical trial of Avonex (interferon beta-1a), but by that time, I’d already been living with MS for 15 years.

Many neurologists use the phrase “time is brain” to support their belief that highly effective treatments should be used as early as possible to try to stop MS progression. I agree with them. I wonder what my life would be like if any DMTs, particularly the high-powered ones, had been available 42 years ago.

I’m close to my 75th birthday. Will any of these five wishes appear in my lifetime? I’d settle for just one.

While we wait, you’re invited to visit my personal blog at www.themswire.com.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

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About the Author

Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun.

Comments

Raaju

Is'nt there any Chance of recooping to normal life

Ed Tobias

Hi Raaju,

Unfortunately, I'm unaware of anyone returning to "normal" for an extended time. Some of the more effective disease modifying therapies have been able to improve some symptoms, and so have stem cell transplants. But in most cases, unless these treatments are repeated, the symptoms almost always return. Some people also say they can control or eliminate their symptoms with diet and/or exercise. Hopefully, some day in the future, research will find a way to reverse everything.

Reginald Bavis

I too have MS I was diagnosed in 95 with secondary progisive and live in Mississauga Ontario I have had on help from the MS society and now live on my own to deal withMS I agree that tings have to be concentrated on a cure for this disease that effects many people around the world, it is now too late for me but with a greater push on research this disease could be cured .

Ed Tobias

Hi Reginald,

Thanks for the comments. It's also too late for me but things are much better today for people newly diagnosed than they were for you or me. Hopefully they will continue to follow that course.

Brian oneill

My Ocreus infusion twice a year costs my insurance $200,000. Since the insurance companies are so money conscious, why don’t they approve stem cell transplants around $125,000 once every five or ten years. I’ll never understand that one.

Ed Tobias

Hi Brian -

No, that doesn't make sense to me, either.

jane

I also have been living with MS since 1985. I was 28. There were no DMT's available. My Neurologist suggested Avonex. I Took that for awhile.
Years later i progressed to secondary progressive and have been on Ocrevus . It feels like a miracle drug. I'm also on Ampyra which keeps me walking. I have had the disease for 39years.
I feel blessed

Ed Tobias

Hi Jane,

Going from Avonex to Ocrevus is like going from a pickup truck to a sports car. I hope it continues to work well for you.

Mario Zapata

I too have MS. However, my journey, which I may write about one day, if I believe it can help raise money for research and treatments, is a testament that enormous amounts of money and resources were squandered, and continue being squandered because of various shameful/inexcusable reasons, that should have never been allowed to happen, and never be allowed now, or in the future.

Ed Tobias

Hi Mario,

Thanks for sharing your thoughts. In high school I had a teacher who would always tell me, "you've got to think positive, Eddie." I always try to keep his words in mind, even though he spoke them to me over 50 years ago.

Genevieve

I have the same sentiments! I've been grabbing on to straws for 23 years, while experiencing a steady decline. But I am excited about the Epstein Barr Virus connection.The EBV study at Stanford University is a game-changer .At least we can start by doing what we can to calm the virus in our bodies and try to rebuild. Lets hang in there....there are many therapies coming down the slooow pipe.

Ed Tobias

Hi Genevieve,

Thanks for your comments, all of which are spot-on. There's a song in the musical "Damn Yankees" called "Ya gotta have heart." I'd sing it changing "heart" to "hope," although we really need to have both.

Leanne Broughton

A wish list too late for me but I would start with prevention now that the medical masters seem to think Epstein-Barr is responsible for much of the disease, a vaccine should be used. Next is Stem Cell Transplant, fully covered, iin the early days.of diagnoses. Education but as other health care illnesses this could take decades. Myelin treatment. Using the best/strongest DMT's in the early days. They are all equally important so it is hard to rate them.

Ed Tobias

We think alike, Leanne. But I think you already know that.

Rachel Kamen

I do want to know that even though you have limitations that you´d prefer were not there, you provide a lot of hope and inspiration for me in that yes, you are 75, but you describe a life lived in spite of the limitations and it certainly appears that you have your mental faculties intact. I boarded the MS train in 2011 and started with Copaxone, then Fingolimod, then Ocrevus and now Mavenclad. I tried for stem cell with Dr. Burt 2-3 times and was turned down. The bummer now is that most clinical trials won´t take you if you´re over 55 or have taken prior heavy hitter DMTs. Maybe those of us over 55 will be eligible for the myelin rebuilding trials as we´d be the best cases in showing improvement.

Ed Tobias

Thanks so much, Rachel. Yes, I try to live by the philosophy that life isn't about hiding from the storm, it's about learning to dance in the rain. As for having my mental faculties intact, my wife might disagree with you about that.

I couldn't agree with you more about discrimination against older people with MS. In fact, I wrote something about that a couple of years ago: https://multiplesclerosisnewstoday.com/columns/2021/04/20/research-patients-50-older-dmts/ It's a great idea about remyelination trials using seniors like us.

Danny S

Not quite as long as you, but Dx in 1991. At 55, I had hopes years ago. Those are gone now. I can still walk...and...fall. I can type at least. Heard a lot of pseudo cures over decades from CCVSI to bee venom to myelin repair foundation. The stem cell transplant I had in Freeport was great, for 12 to 16 weeks. Basically, I'll believe it when I see it.

Ed Tobias

Hi Danny,

Ah, the old bee venom cure. I haven't heard about that one in many years. I'm glad you can still walk and I share your ability to fall...sometimes even off my scooter! I'm also skeptical about some research, but I try to never lose hope.

Diana

I was diagnosed with primary progressive ms about 13 years ago .. I live north of Toronto, Canada and just like Reginald’s comment, receive no support and left to deal with things by myself. An MS clinic known worldwide even told me on my first visit that they would schedule another appointment in a year and if anything happened in the me in that timeframe to go to emergency at the hospital.
People really need to be educated about MS and Canada really needs to get to the same level of care as many other countries after all, Canada does have an astounding number of people living with MS. I fully agree, research needs to be accelerated and a focus on repairing nylon needs to be forefront

Ed Tobias

Hi Diana,

Thanks for your comments. Your lack of support, especially from your MS clinic, is disappointing, to say the least. I'm so fortunate to have had an MS neurologist, for many years, who I can contact anytime for advice or help. I hope you can find the same within Canada's healthcare system.

Adrian

Thanks for the article Ed:
I've had MS since 1994, I was a family physician in Guelph, Canada for 25 years, I worked overseas ( Africa) and various emergency rooms for 5 years before that. 5 years ago my neurologist, who is quite brilliant, said to me "Adrian , you should retire, your aren't remembering things like you should" Sadly he was correct, so I retired. I'm on so many DMT's , which help but not the way they should . Yes prevention would have been great, but for me it's too late for that for me now. I do wish that stem cell treatment ( or any treatment that would change the course of my disease) for my state , Chronic Progressive MS would help me, but from all the research I've done it doesn't look like that it the case. I'm seeing my neurologist in 2 weeks and I imagine he'll say again " sorry Adrian, there really isn't anything else." what I do find helpful is exercise, not running but going on a cross-trainer, which I can do. Reading books is still enjoyable ( not too complicated please!) Again Ed, thanks for your post

Ed Tobias

Hi Adrian,

Thanks for sharing your thoughts. Since I've finished my Lemtrada treatments I don't think there's anything else for me, either. I exercise with upper body machines, do some stretching and up/downs from a chair for lower and swim for both. It helps both body and mind. Also to keep my mind sharp I write this column :-) and I also am a ham radio operator who uses Morse code at a relatively high speed (25-30 wpm). It's sort of like speaking a foreign language at this speed.

Thanks for being one of the people who reads what I write.

Karen Kunkel

At 80/years old my MRI showed that plaque and lesions had faded. MS is now throughout my entire body and most have serious heart attacks and strokes. Knowledge is power! No research seems available. Anyone know about treatment andvexpectations?

Marlene Champagne

Fractalkine may be the HOPE we are all waiting for, Please take a moment and check the literature out of University of Alberta Canada.

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