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Don’t Jump to Conclusions Over a Breakthrough MS Vaccine Just Yet

Don’t Jump to Conclusions Over a Breakthrough MS Vaccine Just Yet
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A medical website’s headline screamed, “Breakthrough Multiple Sclerosis Vaccine Shows Impressive Results In Study.” The New York Daily News joined in, highlighting a potential “breakthrough” vaccine. Other media outlets also were using similar adjectives earlier this month. Unfortunately, it’s normal media hype.

I suspect some of it was was encouraged because the company sponsoring the research is BioNTech, which helped to develop one of the COVID-19 vaccines. Now, the company is testing its mRNA vaccine model to see if it can be used to reduce the type of inflammation that destroys myelin.

As is typical in these cases, cheerleading by traditional media has generated a lot of social media buzz. People with MS have been sharing these stories and sounding a little like “The Little Engine That Could,” repeating, “I think I can, I think I can.” 

But hold that train.

It’s a long way to the final stop

I’d like to see a vaccine that can protect our myelin as much as anyone, but I believe we’re still a long way from that day. As Marta Figueiredo pointed out here at Multiple Sclerosis News Today, the research in the previously mentioned stories comes from a mouse study.

It’s true, the investigational vaccine did prevent disease development in those rodents. In mice with early-stage MS, the vaccine candidate halted progression and restored some lost motor function. But those mice didn’t actually have multiple sclerosis, they were infected with an illness that is similar to MS, called experimental autoimmune encephalomyelitis. Also, we’re talking about mice, not men or women.

Don’t jump to conclusions

I don’t like writing about mice studies. A potential treatment may do well on a mouse, but that doesn’t necessarily mean it’ll have the same results in humans. In fact, some researchers are fond of saying mice lie and monkeys exaggerate. There’s even a Twitter account dedicated to this concept.

After the mice tests come the monkeys. If the treatment passes monkey muster, there are then human tests, usually done in three phases. Don’t expect this clinical testing to move at anything like “warp speed,” either. It will likely take years.

As the MS Research Australia website puts it, “While this is an exciting research development, this is still in an early research phase. There are differences between human MS and EAE. … So while this is exciting research, several hurdles need to be cleared before we are likely to see such strategies trialed in humans. In the case of MS, the search for the exact target of the immune system continues.”

They took the words right out of my mouth. Let’s halt the hype that gives false hope. Instead, let’s report, without exclamation points, that another research project is producing some positive results that may, several years from now, lead to an MS vaccine.

Do you agree, or do you consider this to actually be an MS breakthrough? Please share your thoughts in the comments below. You’re also invited to visit my personal blog at www.themswire.com.

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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.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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38 comments

  1. Kate says:

    I think it’s a great step in the right direction.. I don’t get overalls excited about these things anymore (I’ve had my diagnosis since I was 25, I’m now 42), these things take time. However my fingers and toes (on the days that I can) are crossed when I hear things like this.

    • Ed Tobias says:

      Hi Kate,

      I can’t argue with that. I was diagnosed when I was 32. I’m now 72. A lot of progress has been made over those four decades and I hope this research will produce even more. But I also hope that people will read past the headlines and realize that this “breakthrough” will take time, if it happens at all. I’m crossing everything I can cross, too.

      Ed

      • mark robert says:

        Hi Ed. You’re right. We don’t deserve warp speed. Better to spend all the money raised for us on pissy little trials designed to keep researchers employed.

        Cheers

  2. Tom Harrison says:

    People need to have hope. Its hard to understand why a vaccine thats less then a year old is given to 100s of millions if not billions of healthy people when a few million of chronically ill people with an incurable debilitating disease keep being told that a promising vaccine or treatment might not be safe or help. Many of those people would take the risk to try it, if not to help further a treatment for future MSers.
    Why would it take longer to test this vaccine on people with MS vs the Covid vaccine on healthy individuals? I ask you, Ed.
    It seems there is a huge potential financial hit to the MS drug vendors like Biogen, Genentech and others that control the space. Huge pressure to not develop something like this.

    • Ed Tobias says:

      Thanks for sharing your thoughts, Tom, but DMTs and contagious diseases are two different things.

      COVID is caused by a virus that appears to be becoming even more contagious. MS, of course, isn’t. Could/should the testing of MS treatments be done at “warp speed.” Sure. The same could be said for cancer treatments or those for any disease. Putting aside the matter of pharmaceutical firm profits, there are some killer viruses, like Zika or sars-cov-2, that threaten the world’s physical and economic health. They deserve special treatment.

      Ed

        • Ed Tobias says:

          Vivianne,

          I’m not trying to dodge anything. I’ll try to be more specific:

          TOM: Why would it take longer to test this vaccine on people with MS vs the Covid vaccine on healthy individuals? I ask you, Ed.

          ED: My guess is because governments pushed a ton of money to pharma companies, and rushed some safety reviews, to develop a vaccine to protect against a deadly virus that was overwhelming healthcare services around the world.

          TOM: It seems there is a huge potential financial hit to the MS drug vendors like Biogen, Genentech and others that control the space. Huge pressure to not develop something like this.

          ED: You might assume that, but I’ve not seen evidence of “huge pressure not to develop something like this.” Can you point me to some?

          Ed

    • Vivianne says:

      Thank you Tom. Very well said and I must say I agree with you as a caregiver and a friend of someone who is suffering.
      Ed I saw your response. Seems like you failed to answer the valid questions raised.

      • Ed Tobias says:

        Dear R101,

        I am an independent freelance writer who has lived with MS for 40 years. Before retiring I was a journalist with the Associated Press, perhaps the most objective news organization in the world. At the BioNews, the corporation that runs this website, there is a firewall between advertising and editorial content. Advertising does not affect what I write and I pledge to report facts, document the sources of my information and make it clear when you’re reading my opinion.

        I think you’ll find this to be true if you review the hundreds of columns that I’ve written over the past four and a half years for this website.

        Ed

    • Gioconda says:

      Tom, I totally agree with you! I was thinking that too.
      In any case, in my body this MS thing has felt like a virus, that only acts out in times of highly unhappy periods of my life.

  3. Mary says:

    Years ago I was a healthcare reporter for a daily newspaper. I got daily PR pitches. My standard was : no mice. If this new drug/vaccine/ therapy was not a study in humans and available soon, I would not use valuable new space on it.

  4. Jason says:

    I got diagnosed March last year and just some steroids put it back into remission but being a man of 38 this is something to keep an eye out on for to see if it comes into fruition. All we’ve got is either DMT’s of the very expensive Stem Cell route and both are not a cure. So if a vaccination to heal or prevent this debilitating disease I’ll cross every appendage and wait! This may happen this may not but it’s one step in the right direction.

  5. Peter Weeds says:

    I agree that mouse studies should be treated as only potentially indicative when concerning drugs. Research conducted in Cambridge showed that mice on a fasting or fasting mimicking diet had accelerated and more complete myelin repair. This is something we can all try… that is fasting. I choose not to eat before 5pm weekdays. Anything goes at the weekend, but not during the week. Side effect? Weight loss of 25Kg! Now stabilised and feeling good. Male, MS diagnosis aged 57.

  6. pina says:

    Hola, mi diagnóstico fue a los 36 años. Solamente tenía hormigueos en pie derecho y alguna vez parestesia en una pierna. Así cinco años, que comienzo interferón indicado por especialista en em.
    Cinco años de tratamiento y mi em se congeló, tenía una vida totalmente normal, no sabía lo que era padecer la enfermedad. Lamentablemente la neuróloga que veía después, no creía en el medicamento y me niega continuar el mismo. A los tres años muy lentamente comienza a progresar, enterarme en ese entonces, que no existía tratamiento para detenerla.
    Cuando escuché en la televisión, que de alguna manera y gracias a la pandemia, se había descubierto una vacuna de ARNn que era muy prometedora para los que padecemos esta terrible enfermedad. No imaginan la alegría que sentí, ya que no pierdo las esperanzas de poder mejorar. Pena que lleve años los ensayos clínicos, y la vida se nos va.
    Saludos para todos.

    • Ed Tobias says:

      BELOW IS A GOOGLE TRANSLATION OF THE ABOVE COMMENT.

      Hello, my diagnosis was at 36 years old. He only had tingling in his right foot and occasionally paresthesia in one leg. So five years, I start interferon indicated by specialist in em.
      Five years of treatment and my em froze, I had a totally normal life, I didn’t know what it was like to suffer from the disease. Unfortunately, the neurologist I saw later did not believe in the drug and denied me continuing it. At the age of three, it very slowly began to progress, I found out at that time that there was no treatment to stop it.
      When I heard on television, that somehow and thanks to the pandemic, an RNAn vaccine had been discovered that was very promising for those of us who suffer from this terrible disease. You cannot imagine the joy I felt, since I do not lose hope of being able to improve. It’s a pain that clinical trials take years, and life is going away.
      Greetings to all.

  7. Jay says:

    I wish we would focus on parasites infestation/infection in the central nervous system! Kill the infection and kill the parasites get our lives back! Not rocket science, but the they control the narrative.

  8. Jake Smith says:

    I don’t understand the modern fad of denigrating and dismissing anything short of a certainty as “false hope.” Hope does not imply certainty. Hope is a feeling or desire for something that is not guaranteed. I fail to see how it’s even possible for a feeling or desire to be “false.” But, who am I to stand in the way of the latest catch phrase. If it will be make you happy we’ll all promise to be hopeless from now on.

      • Tt says:

        I just want to say, you are incredibly, ridiculously patient and I thank you for this. You were absolutely and completely clear and as honest as possible. Unfortunately having a disease doesn’t come alongside a medical degree, so we can call down a great many rabbit holes. Again, thank you for the patience.

        I have to admit, I also read those praising articles and was curious, which is how I ended up here. I agree that “in mice” was an indicator that we are not there yet and it is good to remind us where we are.

        • Ed Tobias says:

          Hi Tt,

          Thanks so much for taking the time to comment. I’ve been married for almost 45 years. A guy learns a little about patience over all that time. 🙂

          Hope you’ll keep reading my column. It gets posted every Friday morning.

          Ed

  9. Ad says:

    Eta boy Ed.. who wouldn’t agree?! So many wonders at our disposal every week, why not kill every hope, too much excitement..And that hope right then and there would harm us more than the MS anyway.

  10. Mami says:

    Hi Ed,

    I had a question about the timeline for mrna vaccines. Considering the way mrna vaccines work, and especially in the case of something like this, which would be used only on people with MS, wouldn’t that reduce the time to market by a few years? Since healthy people would not be given the vaccine, the initial human trials for healthy people could be eliminated?

    • Ed Tobias says:

      Hi Mami,

      I’m not a scientist but that’s certainly an interesting question. The little that I’ve read about mrna vaccines leads me to believe you may be right and that scientists have great hope that this sort of vaccine may be able to protect against many different illnesses. It’s worth looking into.

      Ed

  11. Scott says:

    The tone in this article is just so negative and condescending. This is such exciting news for the MS community. I think we all can agree about the stages of research and time frames associated with new drug developments. It will take years, and perhaps become a dead end. However, facts are facts. There is new hope on the horizon, and everyone should be excited and stay informed moving forward regardless of what some journalists tell you how or when you should feel or react to news of this kind. Practice Love, Hope, and Joy………………….

    • Ed Tobias says:

      Scott,

      Thanks for your comments but was my tone “negative and condescending?” I don’t think so.

      IMHO, characterizing the results of any research this early in the testing process as “breakthrough” is misleading and raises false hope. The purpose of my column was to be sure that people read beyond this headline – something too many fail to do – and to put this research into perspective.

      Am I hopeful? Yes. Am I excited? No. Not yet.

      Ed

  12. KM says:

    I completely understand your feelings and hesitance about excitement from years of possible breakthroughs going nowhere – so much that every time the media jumps on something like this, you’re doubtful as a protection mechanism.
    I think this time, if you look deeper – there is a huge difference between this and previous solutions. We have never been able to use CRISPR and mRNA to solve this problem, as they are doing now. The method to tell your immune system to attack a certain virus is the same mechanism to be able to tell your body to stop attacking something perceived as a threat. While this isn’t a “cure”- that would entail knowing what causes the immune system to provoke this response initially, and also be able to repair the damage , but this is the next best thing.
    Calling this a “vaccine” is doing it a disservice, this is gene therapy, plain and simple. We are no longer spraying a body with dead or weakened viral genetic material and hoping it has a positive outcome, which is why so many previous clinical tests fail or prove fruitless in humans. Its also the reason why clinical testing of vaccines takes so much time traditionally. The same for companies testing exotic chemicals in the hopes of providing positive results with minimal side effects- another traditional method with long trial times and clinical study failure rates- this way is different.
    Now, we are going after the root source because we know where to find that at least. We may not know THE cause of MS, but we know what it does, causing the immune system to attack myelin – and that’s enough to tell it stop. It will alter immune systems to stop attacking myelin, much like we tell it to attack a virus. Its targeted- and far more able to be rigorously tested quickly for efficacy in humans BECAUSE it is so targeted. I do agree, its going to be given a lot more time and clinical study than the COVID vaccine, since that was perceived a rapidly emerging threat to their entire population but start expecting trials to start taking place in months, not years. Why? Because we can now create something that does something very specific, and we know very quickly if it works. Doctors currently get reasonably get worried testing a new drug, because its like seeing a bad guy with a gun in a crowd of people, and all they had was an UZI to spray something with. Now they have a sniper rifle. It also gives them the confidence to know they can help just what’s causing the disease without worrying nearly as much about the side effects.
    I think this is the huge underlying difference between what’s come before, and what’s next, which this is the first part of. Any auto-immune disease now HAS the ability to be fixed at the immune system level. We just need to start creating the chemical mRNA key and testing it. Diabetes, MS, most arthritis, celiac, Graves, Addisons. Their days are now numbered. I think this is reason to be excited for sure.
    Also, for anyone worried these companies ARENT going to create these therapies to bolster the current over-priced highway robbery costs of their products? Here is why you do not have to worry – if they don’t create these, someone else will. That is the power of free market enterprise working for you, plain and simple. Either they can reap the financial benefit of creating these fixes, or someone else will. That’s the motivation to do so. And with CRISPR and mRNA, its going to happen a lot faster than it has in the past. They know their traditional and current cocktails of immunosuppressants are going to look downright medieval in 10 years, (the lets-poke-their-brain-to-get-them-to-stop-behaving-a-certain-way kind of medieval if you know what I mean) and are looking to shore up the future by being the ones who can offer them, not a competitor.

    I say, see the bright light that’s at the end of tunnel for this, everyone.

    • Ed Tobias says:

      Hi KM,

      Thanks so much for sharing all of this information. your clear, detailed explanation of how CRISPR and mRNA relate to autoimmune diseases puts this research in a whole new light. If only the various news items I read had explained this “breakthrough” as well as you have. (Have you thought of writing for this website?)

      I appreciate the time you took to enlighten old skeptical Ed. And yes, in the words of Monty Python, always look on the bright side.

      Ed

      • KM says:

        Thank you for the compliment, but I just wanted to make sure the real nugget in this story didn’t get lost – and give people with MS hope that some real changes in effective therapy will be coming sooner rather than later. Since the first mRNA vaccine has now been given safely to hundreds of millions of people and billions more will receive it, the initial hurdle of fear over this new type of drug therapy has had what amounts to the largest proof of concept one could imagine.

        It took BioNTech, the creator of this possible MS treatment, *less than a month* to synthesize a vaccine for use based on receiving the initial genome of the COVID-19 virus. It wasn’t even like that was a “Version 1.0” of the drug, or a first attempt. It was the same drug that is currently being put into people’s arms. They *knew it would work before it even went into the arm of a human* They just needed to test its immediate safety and total efficacy in a large population.

        Now, telling the body to stop attacking what it shouldn’t works in a similar, but separate mechanism. With this type of drug, all they were using the mice for was to get their targeting of the T-cell reaction to myelin accurate, so the mice served more as target practice than true test subjects, literally as micro-bioreactors to ensure it had the expected reaction, instead of the usual “OK, it was kinda effective, maybe.. but at what cost to the organism?”. Another one of best parts of this targeted therapy is also the lack of side-effects. Like I mentioned, you’re now knocking a thimble off someone’s head with with a pellet gun and a high powered scope instead of a shotgun full of buckshot, and just hoping it also hits that thimble while causing as little collateral damage as possible. That is why so, so many drugs fail in clinical testing traditionally. Like the best available MS treatments today, there is still what they call an acceptable trade off in suppressing your entire immune system to relieve the symptoms of MS.

        Most clinical trials spend years cataloging all the myriad side effects (like the ads for drugs on TV where you swear the cure is worse than the disease..I’d just deal with the toe fungus for God’s sake), but you shouldn’t expect there to be any debilitating or dangerous side effects, only what we had for the COVID vaccine – soreness at the injection site, and mild, flu-like symptoms for a short period of time as the immune system has an initial response to the drug therapy. That’s why these drugs should be able to be tested much more rapidly and safely, especially now that the FDA and other regulatory agencies have already green-lit the mRNA COVID vaccine and allowed it to be used safely on hundreds of millions of people.

        I reached out to BioNTech, and they replied stating that they expect human trials of this MS therapy to start in 2-3 years. Take that for what it’s worth.

  13. robyn says:

    This conversation seems to be ignoring the elephant in the room, which is that the cause of ms is unknown. A disease cannot be cured without eradicating the cause. Over the past 25 years I have tried almost all of the DMTs for very brief periods of time to keep my then current neurologist happy. My neuros would tell me about the studies and how they showed that relapses were being avoided. My response always was well, how do we know that those same people would have relapsed during the same period of time if they had not been on the DMT? Oh right, we don’t know.

    The power of the DMTs lies with the patient. If the patient believes that the DMT is working, that is half the battle. The longer that we can stay hopeful, the better off we will be. We need to be a super version of the little engine that could… it isn’t I think I can, it is I know I can.

    Twenty-five years ago, I was told that if I did not start taking one of the DMTs, I would be in a wheel chair within ten years. Well… I didn’t follow the advice and I am not in a wheel chair today. My mris didn’t start really going downhill until 5 years ago when my mri showed three new plaques on my spine. It was then that I agreed to take the “cure” de jour. Am I cured? I doubt it. Have I relapsed since I finished my treatment. No. But, then again the new plaques showed up during a very stressful period in my life (working over 60 hours a week, one parent passed away two years prior and my other parent was diagnosed with stage 4 lung cancer; she lived for four months after the diagnosis), and during extreme stress, there was always a significant chance that I would experience an exacerbation.

    While this advance may not cure ms, if it has minimal horrible side effects, that alone is a win. Again, I firmly believe that the power of the DMTs is in the patient’s belief that the DMT is working.

    I do not expect a cure in my lifetime because there is no incentive to find a cure. Heck, there still is not a cure for breast cancer even though there is an abundance of research money donated to finding a cure.

    • Ed Tobias says:

      Hi Robyn,

      Thanks for your thoughtful comments. You raise a question that I’ve asked myself over my 40 years with MS. I’ll never know how my disease would have progressed, or not progressed, had I not been treated with various DMTs. Certainly, part of my condition today rests, at least in part, with exercise and mindset. What percentage? Who knows?

      Ed

  14. mark robert says:

    If you people want a cure why not advocate for your health. This is from research paid for with our money. We’ll be waiting til he’ll freezes over unless we demand the money be put to better use.

    “Patients value upper limb function and are keen to be included in studies after the loss of walking ability—a recent survey showed 95% of patients disagree with the idea that wheelchair users should be excluded from MS studies.”

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