Let’s talk facts about MS and COVID-19 vaccines

A headline on a WHO site leads to some disinformation on social media

by Ed Tobias | June 2, 2023

Since the early days of the COVID-19 vaccination program, disinformation claiming that the vaccines can induce multiple sclerosis (MS) has swirled around social media. Recently, there’s been a resurgence of this type of post, sparked by a report published on the World Health Organization (WHO) website titled “Covid-19 vaccination can induce multiple sclerosis via cross-reactive CD4+ T cells recognizing SARS-CoV-2 spike protein and myelin peptides.” One post on Twitter, for example, had been viewed nearly 2 million times, shared more than 12,000 times, and received more than 18,000 “likes” in less than a week.

Checking the facts

The facts are that while the report has an attention-grabbing title, its research seems to be less than conclusive. Still, social media platforms have picked it up — including YouTube and Reddit in addition to Twitter — and the posts have created so much buzz that The Associated Press felt compelled to publish a fact-check story headlined “Posts misrepresent research on multiple sclerosis and COVID-19 vaccines found in WHO database.” The AP labeled the claims on social media “false” and reported these facts, as well as others, to support its assessment:

- The item on the WHO website was an abstract, not peer-reviewed, that examined only two cases of people with MS.

- Though the research found there might be a potential link to COVID-19 vaccines, the abstract didn’t definitively conclude the vaccines triggered either of those two MS cases.

- The research paper was not endorsed by WHO, which has cautioned that the research is limited and additional studies are needed to confirm the findings.

Greater MS disability reported in patients with COVID-19 infection

COVID-19 vaccine studies

A survey released in late 2021 reviewed side effects reported by more than 700 people with MS following their COVID-19 vaccinations. I was among them. Conducted by iConquerMS, a people-powered research organization, it reported the side effects for the respondents with MS were about the same as those reported by the general population. There was no indication that the vaccines were an MS trigger. At about the same time, an Italian study of the Pfizer-BioNTech vaccine found no evidence that it increased the risk of MS relapses in the two months following vaccination. The other side of that coin was reported in a study this year by researchers at the U.S. National Institute of Allergy and Infectious Diseases. It concluded that the virus that causes COVID-19 — the virus, not the vaccine — might trigger an MS-like disease in some individuals.

Read past the headlines

Although I believe the benefits of the COVID-19 vaccines far outweigh their possible risks — my wife and I have received five shots so far and are about to get our sixth — I respect the concerns of people who worry that they may be harmed if they’re vaccinated. But I hope they aren’t forming their opinion about a vaccine’s safety based solely upon a six- or seven-word headline or a social media post. Read past the headline to get the full story, which the headline may not accurately reflect. Most importantly, resist the temptation to post information on social media based only on a headline or a study’s title. Helping to keep the disinformation level low will help us all better navigate the information seas, which have become pretty choppy lately. I hope you’ll share your opinion on this issue below and also 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

Kristin Hardy

Excellent article, Ed. As a tech journalist, I can tell you that the single biggest challenge is distilling A complex story into a brief headline. Journal articles contain lots of qualifiers that often get cut out in the summaries (The Columbia Space shuttle disaster has been blamed in part on a poorly written PowerPoint slide that Failed failed to accurately convey the rrisks of reentry with a damaged heatshield).

Two other thoughts – drawing medical conclusions from the study of two people is borderline irresponsible – there's a reason that clinical trials enroll hundreds of people over the course of years.

Finally, correlation does not equal causatiion. I noticed my first ever MS symptom as I walked out of The San Jose convention center. I imagine that somebody, somewhere in the world has had that experience. So can we conclude the trade shows cause MS? Or maybe it's just San Jose, LOL.

Ed Tobias

Hi Kristin -

Thanks for the comments. I agree with them all. I try to stay away from writing about tiny studies and mouse research. Both may be interesting but both can result in encouraging false hope, especially for people who don't read past headlines. And I'm troubled by headlines that are written based more on search engine optimization than an accurate snapshot of an article. But, that's the way of the world, even in traditional print these days.

Robert Eckelman

First disclaimer I am in advertising not in the medical field so talk to your care team I can only share my personal experience. I received the initial COVID shot and a booster, I will absolutely not get another COVID vaccine. I never had COVID prior to the vaccine I did get COVID well after my original vaccine and the booster. That's old news we all already know the vaccine does not stop you from getting COVID. Before the vaccines, I was 100% healthy with no indication of any MS. A few months after the first vaccine I developed optic neuritis. This led to my multiple sclerosis diagnosis. I have no family history of multiple sclerosis, I am a male 57 (at the time), I live in the South get plenty of sunshine, I have a very healthy diet, and very physically active with a low BMI. In short, I should be low risk. The treatment plan was to start Ocrevus. Prior to starting treatment, I was told to get a booster. Within 24 hours of the booster my optic neuritis kicked back in worse than the original attack. My vision never came back in full I now have about 60% in my left eye. I did speak with three neurologists. Each one said the vaccine likely caused the flare. There are articles and there is research nothing surpasses personal experience. This may not be your individual situation, and I am not trying to persuade anyone not to have a covid vaccination, that is a personal choice. I am only sharing my experience. We are all different but in my case 2 covid shots 2 MS flares For me it is an open and shut case.

Ed Tobias

Hi Robert,

Thanks for your comments.

As I wrote in my column, I respect the views of those who now choose not to receive a COVID-19 vaccine. I'm sorry for the reactions you had and I certainly can't argue with the three neuros who told you the vaccine likely caused your flare. The point I tried to make in my column is that people should not judge the validity, or affects, of treatments based solely upon a six- or seven-word headline or a social media post. Too many folks do that, and it's a dangerous practice that's not limited to healthcare.

Robert Walter

Not by a headline no. Look at the source of the headline and a health expert like Dr. John Campbell and realize that everything can be revised over time, The fact is there are a percentage of people having an adverse reaction, A small amount of people have extremely serious reactions.

Ed Tobias

Hi Robert,

Yes, research and opinions can be revised over time. I think we all have a obligation to read past the headlines, look past the "sound-bites," and, especially, always consider the source of the information, no matter what the subject.

SONYA TUMATA

I am 55 years old and I too was very healthy. As an AIN in aged care it was mandatory for me to get vaccinated I received the 2 Pfizer and then the booster. Immediately after I got the booster I started to feel paid in the souls of my feet and 3 weeks after I lost the sight in my right eye and subsequently was diagnosed with MS. There is no record of any member of my family present or past that has or had MS. I will not receive another vaccine.

Oggy Brewer

Ed -
I appreciate your article. I wanted to share that I was a healthy 43 year old male, when I got my 2nd Pfizer vaccine shot. I eat well, exercise 6 days a week, have had no health issues. Three days after getting the 2nd vaccine, I woke up with numb feet. This numbness progressed up my body over the next month and a half. Currently, the tingling and numbness sits in my hands. After going to the neurologist, he did a series of tests -- MRI's, Spinal Tap - he concluded MS. MS does not run in my family and again I have never had any other health issue in my life. The only variable that had changed in my life is taking the Pfizer vaccine.
I'm not telling anyone to not take the vaccine -- it's up to each person to make their own decision. I went to an MS specialist afterward and both he and the neurologist agree that the vaccine has played a role in this diagnosis.
I have began taking Ocrevus and have had success so far in not having any new lesions forming. My major symptoms today are numb and tingling hands 24/7, MS fatigue, and sometimes I have issue with my balance.
I don't know how many people have stories like mine, but the world doesn't want to acknowledge these kinds of stories.
Thank you for hearing my voice.
I appreciate the MS News Today Articles.

Ed Tobias

Hi Oggy,

Thanks very much for sharing your story.

I believe that some vaccinations can trigger illnesses in otherwise healthy people who already live with various risk factors, even if they seem otherwise healthy. This isn't limited to MS. The question is, what are these diseases, what are the risk factors and what percentage of the general population can be expected to have an adverse reaction to the vaccine?

A risk/benefit analysis needs to be made by patient and doctor before any treatment is decided upon and I'm sure you conducted one before starting Ocrevus. In my case, I believed the benefit of being vaccinated against COVID, to me and to others, outweighed the possibility of an adverse reaction.

Yes, the world needs to be acknowledge stories such as yours but we also need to determine how frequently, or infrequently, these events occur. Unfortunately, I think, you're the exception, rather than the rule.

Meanwhile, I wish you well with your Ocrevus and hope you do as well with it as I did with Lemtrada, both highly effective treatments that carry with them some significant risks.

Diane Randall

Kristen, I like your comment but as I recall (and saw from Florida), the Columbia space shuttle exploded as it was going into its flight, not upon re-entry (probably due, as you say, to lack of clear communication that is so vital in this world).
Regarding Covid, I have PPMS and had all the Covid shots (except the last - I am going to do it) plus flu and pneumonia, no problems with either. As a child I had all the "childhood diseases", except polio & tb due to vaccines. Measles, mumps, rubella, chicken pox, whooping cough and more. So glad they have these vaccines to protect children.
By the way, I read that people who had chicken pox should get the shingles vaccine, but the RN at the drug store clinic said I shouldn't have it at the same time as the others. My back itches as it is, so I will do it, but I worry about side effects because, with MS I want to lessen as much medical (and all) stress to my body as I can. Thanks for the article.
BTW it may be that people who get neurological or other illnesses after the Covid vaccines had these illnesses anyway, and Covid vax perhaps was the tipping point. Also, yes, I have heard of some people getting Covid after having their vaccines.

Ed Tobias

Hi Diane -

Thanks for your comments. You may be correct about the COVID-19 vaccines triggering neurological illnesses in people who were already predisposed to those illnesses. (See my response to Fiona Marshall.) As for the shuttle, yes it was Challenger, not Columbia, that broke apart on re-entry. As someone who covered the shuttle program for many years when I worked for the Associated Press, I think about both tragedies every time I see any rocket launched.

Fiona Marshall

https://www.cureus.com/articles/137279-new-onset-multiple-sclerosis-post-covid-19-vaccination-and-correlation-with-possible-predictors-in-a-case-control-study#!/

this is a comparative study of 32 patients with newly diagnosed MS following C19 vaccination and a control group of 33 patients who had the vaccine with no MS development.
As someone who also has had discussions with 4 neurologists, from 3 different centres, each has suggested a link with AZenica vaccine and MS, which in my case occured 6 weeks later.
These studies depend upon funding and my cynical self would suggest that it must be very hard to get enough funding to pull together all the data globally to determine if there is a direct correlation.

Ed Tobias

Thanks for sharing, Fiona.

This very small study's conclusion reports that, for a certain group of people, who are EBV positive, have a low Vitamin D level and a family history of MS, a COVID-19 vaccination may propose an additional risk. It also says "a definite association between COVID-19 vaccine with MS is not described, rather it is aimed to highlight the possibility of this association as an independent risk factor that can trigger new onset MS in the susceptible group. Though, more data is needed for further correlation."

Since it's known that being EBV positive, alone, poses a significant risk factor for developing MS I don't think this study is a good one to use to try to make the case for a direct connection between the vaccine and MS.

Scot Richard Peterson

Just my personal experience. I was diagnosed with MS in 1995 and have been functioning as well as could be expected. Warm days are difficult but have lived a fairly normal life. Since my 2 vaccines I have had 2 significant flareups that required short hospital stays and now need a cane. I have always been active and have not given up on exercise but it's not the same. Can't say for sure there is a correlation but it sure seems related. I am determined to get back to my pre-vaccine state and chuck the cane and will not get another vaccination.

Ed Tobias

Hi Scot,

It's well known that COVID-19 vaccines can trigger a fever. Is it possible that a fever is what triggered your flares, or that timing of the flares was just a coincidence? I was diagnosed in 1980 but didn't need to start using a cane until around 2000, so your progression may simply be following the same course it's followed for many of us.

As for exercise...keep at it. I'm 74 years old and now use a scooter to travel more than about 150 feet. But, I try to get into the gym twice a week. I also swim a lot. My five COVID vaccinations haven't done anything to reduce that.

Scot Peterson

Ed,
Thanks for following up. My situation was strange and can't put a finger on what came first because things kind of exploded. Covid came with a fever which resulted in total incapacity for about 12-15 hours. I had to be taken to the hospital on stretcher because I couldn't lift myself up to walk. Spent 2 nights in the hospital for Covid but recovered my strength much faster. The second stay was for a UTI, which I have never had before, but an MS flare up came with it, again, no strength. Keep in mind, I had not had this happen since 1995, I have battled the disease without meds since 1998. Since the vax, walking is a struggle, need a cane all the time, and my balance is poor. Again, have no proof that the vax is the reason but seems like a connection. Life is different now after many years what felt like success.
Btw, swimming is my saving grace, without it I'm not sure what I would do. Mentally and physically it what keeps me going, glad to hear it works for you as well. My best to you and as I tell others, keep on keeping on.
Scot

Teresa

I have not had the vaccines. Before, I worked 60+ hrs at a group home for people with developmental disabilities and all but one of the families/ guardians were adamant about their people getting vaccinated. I have to wonder if the months I spent with them in such close proximity, it might have effected me in some way... I have seen several sources linking the vaccines to a diagnosis of MS but I would like to see a study done with unvaccinated people spending time very close to vaccinated people- how many develop MS months later... There will never be anything that could come of it, but I would still like to see it studied.

Ed Tobias

Hi Theresa,

Vaccine or no vaccine, COVID-19 or no COVID-19, there has never been anything to suggest that MS is an illness, like the flu, that can be "caught" by being in close proximity to someone.

Post vax MS victim

So had 2 Pfizers vacs as recommended - 6 months later unable to get out of a chair or walk....finally noticed Potassium levels on the low side in 8 different blood tests - I self increased dietary intake of potassium - 6 months later can walk normal again, get out of chairs unassisted, go up stairs and do not need a cane anymore. Still pain, numbness and tingling but a lot better.

Ed Tobias

An interesting comment. I've read that a low potassium level over an extended period of time can cause MS-like symptoms, such as tremors, spasms, general muscle weakness, and fatigue. So, your symptoms may have had nothing to do with your MS and I question whether the COVID-19 vaccine caused your low potassium. What did your doctor say?

Jesper

Ah yes, the strange differences in the standards we hold ourselves and others to. Surely it would be bad to base everything on headlines in social media posts, but is it much better to base it on just two individuals who got five shots each?

Ed Tobias

Nope, Jesper, and I certainly don't expect you, or anyone else, to do that. I don't suggest that people do as I do but I do want them to understand that there's more to most stories than just what the headline says.

Carrie

Thought I'd throw my experience into the hat. I'm a 46 year old woman. I've been diagnosed with RRMS since 1999. I went on LDN in 2009 and didn't look back. I ended up having to quit a really good job I liked last year because of my debilitating fatigue. Because of my LDN I didn't immediately blame my MS as I'd been otherwise symptom free. Here I am almost a year after quitting and finally accepting fatigue has got me. I saw a neurologist last week and talking about getting on meds which I try to avoid as much as possible. But this fatigue is ridiculous and keeping me from living my life. And especially after reading all these other stories I'm fairly certain the vaccine, which I am very PRO, kicked my MS ass. Fingers crossed I can find a medication that lets me live a normal life again! I'm not ready to be done. I got some good years left in me still I hope!

Ed Tobias

Thanks for sharing, Carrie. I'm sorry you've had those problems and it's possible yours were triggered by a COVID-19 vaccine. After all, one of the side effects is a fever, which can certainly trigger an MS flare.

There are several meds that can help with MS fatigue. I've been using one for years. Here's some info that might help: https://multiplesclerosisnewstoday.com/multiple-sclerosis-symptoms/fatigue-multiple-sclerosis/ I hope you and your neuro can come up with something to help you.

Janne Rytkonen

Thank you for your article Ed Tobias. My understanding is that Covid19 itself MAY also cause MS or MS-like symptoms. Are you able to point me to any research that compares the rates of these post-infection MS-like symptoms in mRNA-vaccinated and non-vaccinated people? Would that be one way of separating vaccines injuries from Covid19 injuries?

Ed Tobias

Hi Janne,

No, not off the top of my head. But, I'm not a scientist. Perhaps someone else reading this thread can point you at the research you're asking about.

Seamus Lion

It is very sad to read some of these threads. With no safety testing, there were always going to be huge risks with COVID vaccination - I work in the MS research world and can tell you that most neurologists privately admit that COVID-19 vaccines have been the worst medical experiment in history, causing substantial, life-changing neurological disability for a significant number of people. There are around 3,400 research papers covering vaccine-related injuries, with many of them focused on neurological injury. There will never be a fully blinded randomised control trial done because the results would be obvious - that's why Pfizer wanted to hide their data for 75 years. Ask yourself the question: how many people do you know who are vaccine injured? I have two siblings who have serious neurological injuries directly attributable to vaccination.

Ed Tobias

Seamus,

Thanks for your comments but we'll have to disagree on this one. I believe the benefits of vaccines far outweigh their risks. If you look at the recommendations of the various medical organizations around the world I think you'll find they agree with me. I'm sorry you have two siblings who have neurological problems you attribute to a vaccine. You ask how many people I know who have been injured by a vaccine. I'm almost 75 years old and I know of none.

Crystal Petrey

Posting to add as I want my story heard too. I am a 24 year old female that was otherwise healthy prior to vaccination. I had contracted covid twice prior to being vaccinated in 2022. In September, Approx. 2 months post vaccination (2nd dose J&J) I developed optic neuritis that persisted for a month before any improvement and immediately relapsed again. I have since made a full recovery and was diagnosed with Multiple Sclerosis in November 2022. I do have a family history of MS so I did always have an increased risk of developing in. I really hope that there is more clarity to come on MS as further research is completed.

Ed Tobias

Hi Crystal,

Thanks very much for sharing. Everyone's experience is a bit different with MS so it helps us all to know what others have gone through. I also hope we'll know more about whatever connection might exist between between COVID-19, the vaccinations and MS and I suspect we will.

Alli Robinson

Definitely going to be an interesting one in the coming years to look at more stats across the countries. I was then a 39yr old healthy women with no prior issues whatsoever, fit as and training for the Coast to Coast in NZ, 2 healthy kids, no history whatsoever of any autoimmune disease in my family. No so long after my 2nd Vax... My entire left side went numb, a pretty crazy experience that intensified into some pretty serious spasms over the next 8 weeks. I am now on a steady treatment plan but I know that my life will never be the same... I suffer pretty badly with wicked distractions issues...always missing my bloody offramps when driving and have to really sort out my workspace to avoid any possible disruptions or distractions that would have never normally being an issue. It doesn't help to dwell I do understand that but I can't help but think....what if this is why.... argh!!

My son had four Covid jabs in a year one with a flu jab at the same time. He still caught covid which turned into long covid. He had a bleed in his back afterwards and myelin sheafs were damaged in his spine he then had a brain scan which showed he had MS. I’m sure it was cause by either the vaccination or long covid. Could the brain lesions diminish if they were caused by covid or the vaccination?

Kylie Jinks

I am a 35-year-old female who was otherwise healthy up until I received the Pfizer vaccine and two boosters trying to do my part - fast forward to a year later and I was diagnosed with RRMS and am now on Ocrevus with no new lesions since starting, thankfully. Can't help but feel like I have been sucked into the grasps of big pharma and now have to pay for this extremely expensive medication and deal with the effects of MS for the remainder of my life. Waiting for more research and a lawsuit some day for this. What a sick world we live in.

Sandra Bethurem

So I’m the odd person out. I was diagnosed with MS in June 2019. I read they did not do research on people with MS for the Covid vaccine. I saw what the vaccine did to fellow work employees; it laid them out for weeks. I decided I would not take the vaccine, because when I have a flair it was bad, I didn’t need to add to my misery. With that being said, I restricted myself away from people. I saw my guy once a week and worked his farm those days and I didn’t see much of anyone else. I got plenty of fresh air and sunshine. My guy and his mom both took the vaccine and boosters. They eventually got Covid. I did not. I was running the farm while my guy was very sick. Yes, the woman with MS stayed outside, worked with cows and stayed away. People with Covid had the same symptoms as an MS flair. I said I’d never know if I ever had Covid, because I live these symptoms daily. I talked to my cousin that was a nurse, she had Covid and described her symptoms. I said it sounds like it affects the nerves, she said I was correct. My guy developed heart problems after having Covid. I also noticed every time he and his mom got a booster, their memory slipped. His mom has gotten Covid twice. I told my guy no more shots, that he didn’t see what it did to him, but I did. It felt like he had Alzheimer’s. As for my family my mom refused to get the shot. My father went to get every shot. Who got Covid with pneumonia and ended up in the hospital? My father. My mom never caught it and had to take care of my dad when he came home from the hospital. Here is what I think and I’m not a Dr. I take Tecfidera for my MS. twice a day. It is an ugly drug to deal with, BUT I’m wondering if it somehow blocked me from getting Covid. I’ve been on the drug since diagnosed without new lesions. Just to let you know I have lesions everywhere they can be, I have them. I watched a lot of people recovering, different stages of Covid once we were able to go back to church. I got to sit through people say it was spread by the unvaccinated. I didn’t give it, I was the healthiest and kept away from people, they were constantly going to big towns exposing themselves. I couldn’t wear masks, but maybe 30 min. due to asthma , so I elected to shop in our little town. My treatment for myself was fresh air, sunshine, hand sanitizer, washing frequently, and staying away. I’d rather live through MS hell, than deal with the long term effects of Covid, I believe. I empathize with people that had Covid and I’m so sorry you were diagnosed with MS after everything you went through. I will not get a Covid shot ever and I don’t take the flu shot either, because I get sick the day after I take it and I’m not allergic to eggs. I’m a very sensitive woman when it comes to medications. Just read and do your research and make your decisions. I keep digging for new info., never stop learning about whatever disease you have.

Sandra

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