Research Ideas
These research questions have been driven by iConquerMS participants as part of the Our Questions Have Power program. iConquerMS participants can vote or comment on the questions they most want to see answered by research.
Please use the Category, Stage, Priority and Sort by filters to find the questions that are of most interest to you and vote or comment on those questions. Your votes and comments will determine the priorities for advancing the questions to co-created studies with MS researchers.
To vote on a question, first make sure you LOGIN to your iConquerMS account or JOIN iConquerMS then LOGIN. Then click the “Vote & Comment” button on the question and answer these questions: .
- Do you agree that answering this question should be a high priority?.
- Would the results of research on this question be helpful to you? .
- Would you be interested in participating in research on this question?
You can also make a comment about any question. You can vote on as many questions as you like. Be sure to visit iConquerMS periodically so you can vote and comment on new questions that are submitted.
-
Category:Good fit for:Other Researchers
Is hericium erinaceus ("lion's mane") effective in reducing the symptoms of MS? What about remyelination of nerves?
I understand that hericium erinaceus stimulates NGF. How does this sort of treatment compare with something like PIPE-307 whose mechanism is to blocking muscarinic M1 receptors? Lion's mane is old; PIPE-307 is not.Priority:0 comment(s) -
Category:Good fit for:Other Researchers
Are people with MS hypersensitive to medications due to increased blood brain permeability? Are they at increased risk to develop side effects to meds that don’t typically cross the BBB? What are the implications for medication administration?
I have not been able to find any research studies on this topic. Personally, I feel like I am hypersensitive to medications and this has led to fear when starting new medications. I always ask my doctors to start at the lowest dose possible. I wonder how this affects medication‘s like anesthesia, chronic illness medications for diabetes, cardiac conditions, and thyroid, and pain medications. What type of drugs can leak into the CNS either through lesions or micro changes in the CNS?Priority: -
Category:Good fit for:
MS and Smell Dysfunction
Do MS DMTs negatively impact recovery from Hyposmia?Priority: -
Category:Good fit for:
Does Copaxone impact Cholesterol?
Does Copaxone increase LDL cholesterol and a1C?Priority: -
Category:Good fit for:iConquerMS
Does Ocrevus help relieve MS-related pain?
Priority: -
Category:Good fit for:iConquerMS
Does MS or DMT's change women's menstrual cycles?
I have been on Nexplanon birth control (arm implant) and did not have a period until started Kesimpta. It slowly progressed to a standard cycle like pre-nexplanon and then went more aggressively to two cycles in 3 weeks.Priority: -
Category:Good fit for:iConquerMS
Is it possible that B cell depleting DMT's are increasingly causing more gastrointestinal issues?
While Ocrevus is a miracle drug for most, I had a different experience. When I was on Ocrevus I had SEVERE stomach pain and distress. I am happy to report that after ~550 days after my last infusion I am pain free, but many people report similar issues on various social media outlets, that this might be worth an investigation. .Priority: -
Category:Good fit for:Other Researchers
Can transcranial magnetic stimulation help with Fatigue, depression and pain in MS?
a study on transcranial magnetic stimulation could also apply to a number of subjective as well and objective measures, such as walking ability. This could be potentially life changing as it would be a way to treat ms with out the side effects of the DMTsPriority: -
Category:Good fit for:iConquerMS
How do people with MS under age 60 compare to those over 60 in terms of occurrence and type of co-morbidities, severity, age of onset, and related factors?
I am frustrated that no people age 60 or over are included in any DMT trials. Any results of a DMT study do not apply to the 60plus MSers.Priority: -
Category:Good fit for:Other Researchers
What strategies can be implemented to improve education for primary care physicians on multiple sclerosis?
What strategies can be implemented to improve education for primary care physicians (including DOs, internal medicine, and family doctors) on multiple sclerosis, so they better understand disease progression, symptom management, and treatment options—ultimately enabling them to accurately diagnose and treat other conditions in MS patients, rather than attributing all symptoms to MS and overlooking necessary treatments?Priority: -
Category:Good fit for:Other Researchers
Does Adderall help with MS pain?
I have been taking Adderall for exhaustion for 15 years and I notice after taking it my pain is reduced. As the day wears on and the Adderall stops keeping me awake my pain increases. Is Adderall known for helping with MS pain?Priority: -
Category:Good fit for:
Is leg edema related to MS (or footdrop or neualgia)? Is there a treatment or physical therapy for it other than just walking more?
Priority: -
Category:Good fit for:iConquerMS
How common are podiatry issues in people with MS that occur due to leg weakness and other symptoms? What strategies work best for managing these issues?
Since I have a weak right leg, I use my left leg more frequently for stability and rotating to a new direction. I affix band aids to two of my toes to prevent bleeding sores from forming.Priority: -
Category:Good fit for:Other Researchers
How can neurologists and mental health providers collaborate to differentiate MS lesion-related emotional challenges from mental health disorders and adjust treatments for a holistic approach to improve patient outcomes?
For example, an MS patient with a lesion in a brain region affecting emotion might present with symptoms resembling depression. However, their neurologist and mental health providers may work in siloed ways, addressing different perceived causes of the issue. A neurologist may focus on MRI findings, noting the lesion's location and monitoring changes over time. Meanwhile, a counselor might prioritize lifestyle changes without emphasizing adaptation and coping skills specific to MS-related challenges. At the same time, a psychiatrist could prescribe medications for a perceived chemical imbalance that the patient may not need and may escalate dosages or add medications if no improvement is observed. If the patient is undergoing counseling and taking psychiatric medications without seeing improvement, they might internalize these challenges, believing something is "wrong with them." This emotional distress could exacerbate MS symptoms in a cyclical manner. A more integrated, holistic collaboration between neurologists and mental health providers could lead to better symptom management, improved outcomes, and enhanced overall well-being.Priority: -
Category:Good fit for:iConquerMS
How prevalent to others with MS is burning mouth syndrome, where your tongue hurts constantly?
The pain is also in the roof of my mouth a lot of the time, my mouth often feels dry, and I feel the urge to spit occasionally. One website says maybe I'm perimenopausal :(Priority: -
Category:Good fit for:iConquerMS
Does MS cause scalp pain and tenderness in the middle of scalp along with sensation of something is crawling inside of head?
I have a sore tender spot at the top of my head. I have been living with this for a few years, It is very sore when you touch it. I have check the area and there is no irritation. It is just very uncomfortable. I cannot let anything touch that area. Also, when I bend down I feel a sensation like something is crawling in certain part of the head. I have to rub the area to make it stop.Priority: -
Category:Good fit for:iConquerMS
Can MS cause hallucinations?
I would also like to know what medication will work on these hallucinations.Priority: -
Category:Good fit for:Other Researchers
What is the best treatment for MS patients who experience nighttime foot-twitching?
Several times a night I am awakened by twitching of either foot. I have ben prescribed 200-300 MG of gabapentin to be taken at bedtime, but it is really hit or miss. Sometimes it works, many time t doesn't. The only thing that seems to help is to get out of the bed and stand up for at least 3 minutes, which seems to "break the cycle" of the twitching. Are there any other proven therapies?Priority: -
Category:Good fit for:Other Researchers
Is there any research specific to trigeminal neuralgia ongoing or being considered? What meds seem best for the condition?
Priority: -
Category:Good fit for:Other Researchers
What causes MS-related fatigue to be so severe that it affects thinking, coordination, speech, and even the ability to sleep?
Fatigue messes with my whole life. I am not able to stay awake but I am also not able to sleep. I feel like I am in the constant state of grogginess. I have poor thought processing, memory, word recall, and coordination. I barely leave the house because I look like I’m on drugs when I go out in public. Anytime I get the least bit still I fall into the half awake half asleep state I live in because I can’t sleep and I can’t stay awake. I take pills to stay awake and pills to sleep and neither one of them work! I am at a loss as to what to do.Priority: -
Category:Good fit for:iConquerMS
Could skin conditions/allergies, eg urticaria, be a symptom and possibly part of the Prodrome of MS?
I and many people I know experienced chronic skin conditions such as urticaria (in my case brought about by heat or cold including exercise induced body temperature increase) long prior to being diagnosed. in my case this intermittent urticaria lasted about 3 years and then stopped and has never recurred. Should unexplained urticaria be a trigger for medical practitioners to be alerted to look for MSPriority: -
Category:Good fit for:Other Researchers
Could MS symptoms be managed through hormone replacement, adjustment, or augmentation?
Could hormone-based therapy also protect against MS exacerbations and disease progression?Priority: -
Category:Good fit for:iConquerMS
Does a CD20 b cell deleting DMT increase your chance of getting long COVID?
Priority: -
Category:Good fit for:Other Researchers
Are MS symptoms linked to specific lesion locations, and could these links be identified through a comprehensive database of MS MRI images?
I've asked my doctor for information on the effects of the placements within my brain of certain lesions. There is currently no real knowledge base to say that a lesion in a certain spot could cause symptom A or symptom B. If there were enough scans with corresponding patient symptoms I believe we could start seeing patterns and relationships between damaged locations and symptoms. We could start to understand the disease from a statistical point of view we haven't had before. Considering we have the ability to share all of this information digitally today it would be relatively simple to put a database together amongst the largest healthcare organizations specializing in MS.Priority: -
Category:Good fit for:Other Researchers
Can right hip flexor problems caused by MS be helped with physical therapy?
Hip flexor problems as hip locking in place like frozen shoulder doesPriority: -
Category:Good fit for:Other Researchers
Do diets or supplements aimed at improving mitochondrial health have the potential to help with MS fatigue?
It always seems that tsunami fatigue was due to mitochondrial collapse.Priority: -
Category:Good fit for:Other Researchers
Does Wellbutrin improve MS fatigue?
I started taking Wellbutrin for minor depression, and it massively helped my fatigue. I googled for a connection and didn't really find one. Obviously it's not crazy to think the reduction in fatigue is due to treatment of depression, but it's a different mechanism, it could help more people.Priority: -
Category:Good fit for:iConquerMS
Does engaging in creative activities, such as art, music, or writing help manage MS symptoms and improve overall wellness?
There has been some research in this area, particularly in specific fields such as how does journaling help with chronic conditions/MS? Art therapy is another field that has been proven to aid in many conditions, particularly in the mental health area (this is just my supposition here). In any case, I would posit that creativity in regard to MS specifically could be explored as a way to enhance quality of life. Here are a few examples based on an AI search in CoPilot: 1. Stress Reduction: Creative activities can be a form of relaxation and stress relief, helping to reduce anxiety and improve mood. 2. Cognitive Function: Engaging in creative tasks can stimulate the brain, potentially improving cognitive functions and slowing cognitive decline. 3. Emotional Expression: Creativity provides an outlet for expressing emotions, which can be particularly helpful for those dealing with the emotional challenges of living with MS. 4. Social Connection: Participating in group creative activities can foster a sense of community and support, reducing feelings of isolation. 5. Physical Benefits: Activities like painting or playing a musical instrument can also help with fine motor skills and hand-eye coordination.Priority: -
Category:Good fit for:iConquerMS
How effective are treatment options for tremor in managing MS-related hand tremors?
I'm right-handed but find my right hand is almost useless because it shakes so much when I try to use it.Priority: -
Category:Good fit for:Other Researchers
Why does high temperatures (70 degrees or higher) have a very significant on the physical (and often times mental) functions of a person with MS?
Heat or outside temperature awareness is a major and daily concern personally.Priority: -
Category:Good fit for:Other Researchers
How effective are available or emerging treatments or medications in treating and preventing vertigo / equilibrium issues in MS?
I take Meclizine and do PT. It does help somewhat but they do not seem help decrease frequency or severity, plus Meclizine makes me sleepy so can't do anything after I take it. It seems doctors can't offer me much on how to deal with vertigo and equilibrium issues. Other reason for Vertigo / equilibrium issues have been ruled out. I would like to see more treatments options for this issue. It's impossible to do anything when I am dizzy, plus more risk for falls.Priority: -
Category:Good fit for:iConquerMS
Do Hispanics as a group have different MS symptoms than non-Hispanic people?
Priority: -
Category:Good fit for:iConquerMS
What are the best alternatives to the EDSS for monitoring disability progression in people with MS whose main impact(s) are not related to walking?
My primary impacts relate to overall fatigue, upper body weakness and fatigue, and cognitive decline. The EDSS doesn't seem to capture my decline in function and therefore my neurologist is hesitant to identify it as progression. This impacts the potential for treatment identification, if possiblePriority: -
Category:Good fit for:iConquerMS
Do MS patients who came down with COVID and took Paxlovid have less of a chance of a MS flare-up than MS patients who had COVID and didn’t take Paxlovid?
Priority: -
Category:Good fit for:Other Researchers
How might the COVID-19 vaccine contribute to the onset or exacerbation of autoimmune diseases like multiple sclerosis, particularly in regions where MS is less prevalent, such as Ecuador?
How do COVID-19 vaccines potentially influence the onset or progression of multiple sclerosis (MS), especially in regions like Ecuador where MS is less common, considering reports of individuals experiencing their first MS flare-ups shortly after vaccination, suggesting a possible link to immune-related complications?Priority: -
Good fit for:Other Researchers
Does using Paxlovid to treat Covid help to calm MS inflammation?
I have RRMS and been struggling for quite some time with horrible brain fog, fatigue, weakness but after Paxlovid and after recovery from Covid I noticed my legs feel different and can take steps out of wheelchair, and having better days as good as can be for homebound patientPriority: -
Category:Good fit for:iConquerMS
Have there been positive results when using Modafinil off label to manage MS Fatigue?
My doctor recently started me on Modafinil as an off-label drug to help my MS fatigue and it's working for me amazingly well and has made such a difference in my quality of life. I'm wondering if any studies have been conducted around this or could be conducted to see if other users have the same experience.Priority: -
Category:Good fit for:iConquerMS
What percentage of MS doctors routinely check for latent viral reactivation in addition to bacterial infections when assessing patients whose symptoms are progressing? What factors influence doctors to perform this check or not to perform it?
Our doctors are quick to rule out bacterial infections as cause of PIRA. No one is checking for EBV, CMV, HHv6 because we progress without symptoms. Grass roots - many of us have a positive EBV early antigen. Test and respond to antivirals. They are the difference between me in a wheelchair and me without assistive devices. As we age, even the typical population has trouble with latent virus. I happen to be AA for that severity gene so perhaps this is why. But it’s a tragedy that neuros and doctors are not checking for this with increasing balance, cognitive and leg weakness difficulties.Priority: -
Category:Good fit for:iConquerMS
Do Covid vaccines or boosters increase the risk of developing shingles in people who have MS?
I had shingles vaccine in 2014. Then after initial covid shot, I started running a low fever during the night, had spasms with my back muscles with 2/3 of my back covered with black muscle bruising, itching & rash. My PCP at the time was from Pakistan & seemed like he really did not like to examine me/woman, but pulled my neck collar back at my insistence & acknowledged I had a rash. I told him I had pain, he said I needed more exercise. I returned 3 wks later & insisted he check black bruising & pain on large parts of my back, he raised shirt at waist about 1 inch & said bruise is because I must have banged myself. So, Shingles went untreated, and I had reoccurring Shingles after each booster & my back is still black. My new PCP said this is what occurs in untreated Shingles, and I also now have low-thyroid because old women seem to 'all' get this after covid boosters. Did Covid vaccine/boosters ignite Shingles in any other MS people???Priority: -
Category:Good fit for:iConquerMS
What are the key deficiencies of knee-ankle-foot orthoses (KAFOs) in terms of comfort and compatibility, and how can advanced design techniques be applied to improving their usability by people with MS?
I have been searching since 2016. It seems as though the market for KAFO's has not progressed at all in the past decade. If we could inform all universities that offer a Biomedical field of study we need HELP! don't understand? Go to google and search for Images of KAFO's. Great for comic con, bad for humans.Priority: -
Category:Good fit for:Other Researchers
What is the effect of Biotin (vitamin B7) on improvements in fatigue for males diagnosed with progressive MS?
A previous Biotin study on MS ended up producing no statistically significant difference in symptoms compared to placebo. A closer look at the individuals who participated in the Biotin study showed some benefit in terms of a reduction in fatigue by using 100mg of Biotin (vitamin B7) three times daily. Those individuals diagnosed with MS who benefited from Biotin were male and had progressive MS. An updated study on Biotin needs to be conduced using the same dosage amount where the only participants taking part in the updated study are male and have been diagnosed with progressive MS (no RRMS patients).Priority: -
Category:Good fit for:iConquerMS
Could pelvic floor physical therapy be utilized to treat bladder and/or bowel issues in MS?
My urologist referred me to a pelvic floor physical therapist and provided samples for me to try after evaluating me and performing a series of tests for nocturia. I have not started the medication yet because if I can eliminate having to ingest another medication, I am all for it. I have started physical therapy and after a couple of sessions, I have noticed that on most nights I am sleeping through the night.Priority: -
Category:Good fit for:Other Researchers
How are long COVID and MS related?
Are they both diseases that are due to viruses that continue to attack the body long after the virus first infects the body? Are viruses like COVID-19 and Epstein-Barr attacking the body in a similar fashion? Can research in both long COVID and MS be applied to one another? I see so many long COVID symptoms that are similar to MS symptoms, like fatigue and brain fog. It's also curious that long COVID seems to be due to a virus that lingers in some people's bodies. There are so many similarities that there has to be research done in one field that can benefit the other. I would also assume that there's money available for long COVID research that isn't available to support research for other diseases that could be due to viruses. There has to be a way to capitalize on funding and the long COVID research to benefit more than just long COVID.Priority: -
Category:Good fit for:iConquerMS
Why do your symptoms reduce when pregnant? Is there a treatment that can imitate so symptoms are reduced?
Priority: -
Category:Good fit for:Other Researchers
Is the Neuro 20 neurostimulator suit helpful for spasticity in MS?
I'm working with the Neuro 20 group to design a pilot study for their device. Based on the results, we would plan a larger, randomized trial. We are interested in validated outcome measures that are important to MS patients. We could use assistance with study design. Primary endpoint: spasticity/pain from spasticity Secondary endpoints: walking speed, fatigue, VAS, ....mostly TBD as we design the study Timeframe: 8-12 weeks of treatmentPriority: -
Category:Good fit for:iConquerMS
Is the use of anti-inflammatory diets helpful in stabilizing or reducing MS symptoms?
I think the use of anti-inflammatory diet are very helpful. I’ve been using it for about six years very successfully.Priority: -
Category:Good fit for:iConquerMS
Do people with primary progressive MS reach a point over time where they stop experiencing new symptoms? If so, in what age range does this typically happen?
Priority: -
Category:Good fit for:iConquerMS
How many people on Tysabri experience a waning effect as they approach their next dose? How much does this effect impact their symptoms and quality of life?
Even though I receive an infusion every four weeks, I notice that I begin to feel more fatigued several days prior. It can vary from month to month how far in advance the fatigue will begin but it feels as if the medication wears off prior to the time I'm due each month.Priority: -
Category:Good fit for:iConquerMS
What is the impact of Long Covid in patients w/RRMS and past cancer treatment?
I’ve had Long Covid for over a year. My health continues to decline. My labs are not normal w/no explanation! I am scared!Priority: -
Category:Good fit for:Other Researchers
Are people with MS who received the Johnson & Johnson Covid 19 vaccine and got blood clots due to it more susceptible to getting blood clots in the future?
The Johnson & Johnson Covid 19 vaccine was "paused" by the FDA in April 2021 due to a small number of people having developed deep vein thrombosis after receiving the vaccine. People who are sedentary (confined to a wheelchair) are susceptible to a degree for developing blood clots due to the fact that they are unable to walk for example. I'd like to know if people who got the Johnson & Johnson vaccine, and are wheelchair-bound if there an increased risk of them developing future blood clots.Priority: -
Category:Good fit for:iConquerMS
What is the impact of continuing or stopping DMTs in people with MS who are over the age of 65?
There is minimal research on this and physicians are recommending stopping DMT’s based on age and concerns with suppressing the immune system.Priority: -
Category:Good fit for:iConquerMS
How is a person with MS affected by having Covid-19 more than once?
I have had Covid-19 three times - January 2020; Fall 2021 and 2022. The first time I had it I lost my taste and it has never really come back. Only occasionally will I get a very slight taste of something, but it doesn't last nor is it repeated with the next mouthful or next time I eat/drink the same thing. After each bout of Covid my fatigue is worse and after the third bout my cognitive abilities have been affected. Things I used to be able to remember easily I now forget more easily than I remember it. I get my days mixed up, forget names I've known for a long time, and there are other things also. The biggest change that bothers me is the level of the fatigue I am feeling. I used to be able to get through almost the whole day and keep busy during that time but now by 10:30 or 11 in the morning I am exhausted and in order to accomplish anything I have to push myself and promise myself that once I get to a certain point in the work, I am doing then I can quit and rest for a while or stop doing it for the day. Of course, my age factors into it as well - I am 73 years young but the fatigue makes me feel much older, but I try not to think of the age that I feel.Priority: -
Category:Good fit for:Other Researchers
More data/experience on ‘wearing off phenomenon’ with Ocrevus treatment. Can next infusion be administered at 5 months instead of 6 months to avoid this wearing off phenomenon?
Priority: -
Category:Good fit for:iConquerMS
For the 5-25 percent of MS patients who do not experience fatigue as a major symptom, is there a protective factor to be learned? Could we understand why they do not report having the most common symptom?
Fatigue is the most common symptom of MS and has had considerable impact on our quality of life. Personally, fatigue has impacted my life in more ways than one, as it tends to drive other symptoms such as depression. Studies say that fatigue occurs in 75-95 percent of MS patients. I am intrigued by the 5-25 percent of patients who do not experience fatigue. Are these patients newly diagnosed? Are there MS patients that are later in the disease that truly experience limited to no fatigue? If so, what could be protecting them from this common symptom, and can that help inform better treatment options for those who experience severe fatigue impacting QOL?Priority: -
Category:Good fit for:iConquerMS
Do some MS patients who are/have taken Ocrevus have advancing disability when compared to other medications. In particular gait and mobility issues.
I am a retired epidemiologist and thus understand health data analysis pretty well. I pay attention to the qualitative experiences patients report about their disease or treatments. I'm the first person that will warn about drawing conclusions from anecdotal experiences. BUT, once you hear enough experiences with marked similarity and observe that there is even a Facebook group of people who have failed Ocrevus AND experienced advancing disability during their Ocrevus experience - you start to wonder. My hypothesis is that there is a cohort of patients who, for whatever reason, acquire mobility deficients rapidly when on Ocrevus despite minimal lesion development when observed on MRI. I'd suggest an analysis of Ocrevus RRMS patients' EDSS scores over time compared to other patients on other treatments. It might not pan out, but I think there is something going on. Thanks for reading.Priority: -
Category:Good fit for:iConquerMS
I would like to know whether IV Nutrient Therapy could help manage MS symptoms and prevent future disease activity.
I’m also wondering about the safety of this therapy and whether there’s a danger from getting too much of a good vitamin?Priority: -
Category:Good fit for:iConquerMS
How are patients living with both MS and other autoimmune diseases managing symptoms, medications and their medical team?
I've had MS for 30 years, and psoriatic arthritis for 18 years. It is frustrating managing 1 autoimmune disease, let alone two. medication management is complicated because I can't take 2 biological medications simultaneously. I take a lot of medications, all of which have side effects. It is important that my neurologist and rheumatologist communicate with each other regarding treatment options. I think there is probably a large amount of people with similar situations. Is anyone studying people with MS and other commordidities?Priority: -
Category:Good fit for:iConquerMS
Do people with MS get long Covid more often than those without MS?
Priority: -
Category:Good fit for:iConquerMS
MS symptoms vary; does age contribute to symptoms stabilizing and/or decreasing as MS people reach their 70's or older?
Priority: -
Category:Good fit for:Other Researchers
For those who have urinary incontinence as a symptom can botox be used long term without complications?
Where are the long term studies. Will I be worse in 20 years if I use botox now or will it simply stop working and return me to my current status?Priority: -
Category:Good fit for:iConquerMS
Does combining intermittent fasting (IF) with Ocrevus treatment help in reducing MS fog in people with progressive MS?
I have been on the Ocrevus treatment for several years now and doing an IF dietary regiment where three alternate days per week my caloric intake is under 500 calories. I believe this combination has reduced my MS fog and enabled me to focus better on my work activities, and I would be interested in knowing if it would have the same effect in other people.Priority: -
Category:Good fit for:iConquerMS
How many have been fully vaccinated then months later tested positive for Covid-19?
I haven't had covid 19 and this is my 1st positive dx ever. Thankfully my symptoms have been pretty mild thus far...Priority: -
Category:Good fit for:iConquerMS
Can specific ingredients cause MS symptoms to worsen?
For instance, consuming wheat or sugar can create spasms for me.Priority: -
Category:Good fit for:Other Researchers
Can anxiety be directly related to MS lesions?
I have extreme anxiety. One neurologist, mine, said it is because I developed 2 lesions in the mood part of my brain. It came on suddenly and hasn't subsided. When using a forum, a neurologist told me this wasn't possible. I'd like to know if there is a study or relation with lesions causing (severe) anxiety.Priority: -
Category:Good fit for:Other Researchers
Can high doses of vitamin D3 (for example, the doses used in the Coimbra protocol) bring about a remission of MS symptoms?
Priority: -
Category:Good fit for:iConquerMS
How does menopause affect the symptoms of MS? Can symptoms worsen due to menopause/hormonal changes regardless of disease progression?
Priority: -
Category:Good fit for:Other Researchers
Does mental overload lead to worsening of MS symptoms such as pain and difficulty walking, and if so, what causes this to happen?
I've noticed that if I am getting mentally drained (even talking with someone for a length of time, say an hour...or that particular person is talking a mile a minute, I get emotionally drained) in which afterward my MS symptoms are off the charts! The ability to walk normally, the pain level is super high, I can't think, my emotions are all over the place (I even cry). I can't be the only one going through this. The more my brain is overloaded the worse I am. This could take as little as 40 mins to 2 hours and then I'm DONE!Priority: -
Category:Good fit for:iConquerMS
Does a person with MS have a greater chance of also having Narcolepsy (with/without Cataplexy)?
I not only have PPMS but also narcolepsy with cataplexy and what started out as Severe Obstructive Sleep Apnea that has gone onto Complex Sleep Apnea (I needed to have a trach tube put in in 2005 that is still in place and will never be removed). While researching all three diseases I found out they are all autoimmune diseases. Besides these I have Fibromyalgia and about 29 or 30 other diagnoses. Some due to the MS but many due to family history and living on a fixed income my whole adult life and not being able to buy the right foods to keep my weight down (and not being able to exercise well). It seems to me that these three diseases must somehow be "related" or affected by each other.Priority: -
Category:Good fit for:iConquerMS
Should MS patients taking DMTs get a full dose or a half dose of Moderna vaccine as a booster?
The manufacturer recommends half dose for all people receiving a Moderna booster.Priority:Research Summary:
Key Takeaway: In general, people with MS should follow the CDC guidance for COVID-19 vaccination and boosters. However, since everyone’s situation may differ, the best advice is to discuss vaccination strategy with your doctor. The guidance on booster timing continues to change. For the latest information, visit the CDC website.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
Additional considerations
People on certain therapies may not have a strong immune response to COVID-19 vaccines and should discuss their vaccination and booster schedule with their physician. While the dose of the vaccines will be the same, the number of boosters recommended may differ. For more information about which MS therapies may reduce the effectiveness of COVID-19 vaccines, click here.
-
Category:Good fit for:Other Researchers
If someone has the genetic/lifestyle risk associated with EBV, does that mean that they are also particularly susceptible to long Covid if they get Covid?
Priority: -
Category:Good fit for:iConquerMS
Have you received antibodies to prevent infection if you have not mounted an antibody response to the vaccine?
The FDA gave Emergency Use Authorization to AstraZenaca's EVUSHELD in December 2021 for those who, because of immune status or medication have been vaccinated but were unable to develop antibodies (most on b cell depletion or CD20 meds) or those who are unable to receive the vaccine. Many MS centers around the US are offering it to their immunosuppressed patients. On February 24, 2022, the FDA modified its recommendations to add a second dose as soon as possible after the first since it is not as responsive to the Omicron variant as they would like to have seen.Priority: -
Category:Good fit for:iConquerMS
How is a person with MS affected by being a COVID-19 long-hauler?
I've had COVID-19 twice. The first time was in January, 2021 and the second time was in October, 2021. The first time I lost my sense of taste and it hasn't come back yet. I can taste whether things taste good or bad or a little salty but nothing more. My fatigue had increased as has my breathing problems. Do folks with MS become long-haulers more than the general public?Priority:Research Summary:
Key Takeaway: Most people with MS who have a COVID-19 infection recover fully. In one study, 12% of people with MS had COVID-19 symptoms longer than 12 weeks (Garjani). People with MS may be more likely to experience longer lasting COVID-19 symptoms compared to the general population. People with MS are more likely to experience symptoms lasting for up to six months after infection. However, there may be no difference in long COVID rates by 12 months post infection. More studies are needed on the topic of long COVID and MS.
Factors that increase the likelihood of long COVID: People with depression or a high physical disability level may be more likely to experience longer lasting COVID-19 symptoms.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on April 23, 2023.
SOURCES:
UK MS Society
Other Sources
- Garjani A, Middleton RM, Nicholas R, Evangelou N. Recovery From COVID-19 in Multiple Sclerosis: A Prospective and Longitudinal Cohort Study of the United Kingdom Multiple Sclerosis Register. Neurol Neuroimmunol Neuroinflamm. 2021 Nov 30;9(1):e1118. doi: 10.1212/NXI.0000000000001118. PMID: 34848503; PMCID: PMC8631790.
- Conway, S. E., Healy, B. C., Zurawski, J., Severson, C., Kaplan, T., Stazzone, L., ... & Houtchens, M. K. (2022). COVID-19 severity is associated with worsened neurological outcomes in multiple sclerosis and related disorders. Multiple Sclerosis and Related Disorders, 63, 103946.
-
Category:Good fit for:iConquerMS
Is mental health therapy being recommended as a course of therapy for M.S. since M.S. patients have the highest rate of depression and other cognitive issues?
Priority: -
Category:Good fit for:Other Researchers
Of the small percentage of people with MS who got the J&J vaccination and booster, what percentage developed lung problems (blood clots in the lungs, etc.)?
Priority: -
Category:Good fit for:Other Researchers
Could reactivation of the Epstein Barr virus make MS symptoms worse? Could this not be easily answered?
Antivirals could be developed to affect the EBV and used for relapses or progression.Priority: -
Category:Good fit for:iConquerMS
For those taking a B-cell depletion medication such as Ocrevus, are they achieving better results in managing their MS symptoms and slowing progression by combining it with an intermittent-fasting (IF) dietary regiment?
It has been shown in studies that the microbiome (gut bacteria) is different compared to a normal individual for those patients diagnosed with MS. Can following an intermittent-fasting (IF) dietary regiment where an individual fasts three days per week combined with b-cell depletion such as Ocrevus slow progression of MS even further than b-cell depletion only.Priority: -
Category:Good fit for:iConquerMS
How has memory loss impacted your life?
Priority: -
Category:Good fit for:iConquerMS
Is there a correlation or association between MS and Vocal Chord Dysfunction (VCD)?
I have MS and have also had VCD for the last 6 years. My constant breathing difficulty (choking sensation) with the VCD is much worse than my extremely bad MS. I have tried speech pathology and Botox injections to no avail and wonder whether this is happening due to my lesion in my brain stem.Priority: -
Category:Good fit for:iConquerMS
How beneficial is Evusheld for people with MS on B-cell depleting DMT's like Ocrevus?
The FDA just gave emergency use authorization for this drug. I've attached two links. https://www.astrazeneca.com/media-centre/press-releases/2021/evusheld-long-acting-antibody-combination-authorised-for-emergency-use-in-the-us-for-pre-exposure-prophylaxis-prevention-of-covid-19.html https://www.accessdata.fda.gov/scripts/cder/daf/index.cfm?event=report.page There should be a study done to look into how the efficacy changes across the spectrum of COVID-19 vaccines including Moderna, Pfizer, and Janssen.Priority:Research Summary:
Key Takeaway: As of January 2023, Evusheld is no longer authorized for use in the United States because it does not protect against the newest COVID-19 variants. With earlier variants of COVID-19, studies showed that Evusheld was beneficial for people with MS on immune suppressing drug treatments by increasing COVID-19 antibodies.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 21, 2023.
-
Category:Good fit for:iConquerMS
Does night-discomfort or night-stiffness, that may or may not cause you to wake up, increase your core body temperature during that time period?
Note: This is not a menopausal hot-flash or night-sweatting, UTI, flu, or other current medication side-effect.Priority: -
Category:Good fit for:iConquerMS
Why do some people develop speech symptoms as their disease progresses such as stuttering, slurring, and dysarthria?
Priority: -
Category:Good fit for:Other Researchers
What benefit does electrical stimulation have on symptoms of MS (fatigue, strength, endurance, etc.)?
Priority: -
Category:Good fit for:iConquerMS
Regarding varying levels of numbness during intercourse for people with MS; What can be done to increase sensations during sexual activity? Are there programs that focus on the mental experience during sex to circumvent the lack of physical feeling?
Priority: -
Category:Good fit for:iConquerMS
When diagnosed with more than one autoimmune disease, what are some ways to distinguish the roots of the symptoms and how to manage them appropriately?
MS symptoms are often similar to other autoimmune disease symptoms as well as medication side effects. At times it is very difficult to distinguish why a symptom is caused, for example fatigue when having MS, Connected Tissue Disease, Hashimoto's, Depression, and taking Alendronate (Risedronate) for Osteoporosis. The preface of my proposed question is, does it matter what causes it? If it does, how to you deal with the cause and if it continues more than 'normal', what are the best approaches to handle it and who should you reach out to?Priority: -
Category:Good fit for:iConquerMS
Different people have different symptoms and react differently to different medications. I propose a study to see if different physical therapy (PT) regimens may be more effective that others. For instance, land-based PT, vs pool-based, and even Yoga?
Priority: -
Category:Good fit for:iConquerMS
Why does there seem to be little research and treatment options for dizzyness/lightheaded feelings?
This is one of my most irritating symptoms and it gets worse the longer I am active. Vertigo medication only seems to help a little if it is very bad. What are the best treatment/management options for dizziness/lightheadedness?Priority: -
Category:Good fit for:iConquerMS
Do people with MS on baclofen experience fatigue worse than those who are not on baclofen? Do people with MS on baclofen experience fatigue worse than people using baclofen for non-MS conditions?
Priority: -
Category:Good fit for:iConquerMS
What are the best strategies for preventing falls in people with MS based on specific causes, such as dizziness or weakness? Are combinations of some strategies more effective than single strategies alone?
Priority: -
Category:Good fit for:iConquerMS
Are the frequencies and characteristics of “MS Hug” different for people with MS (PwMS) of different characteristics, such as age, sex or disability level? Are some MS Hug treatments more effective than others in specific PwMS?
I'd also like to know if combinations of treatments are more effective than any single treatment for MS Hug.Priority: -
Category:Good fit for:iConquerMS
What can people with MS following specific diets expect in terms of fatigue improvement, and is this affected by personal characteristics, like age, disability level, or initial fatigue level? Can combining diet with exercise help reduce fatigue further?
A number of research studies have shown that specific diets or exercise can improve fatigue in people with MS. More evidence is needed that can help to personalize the treatment of fatigue in MS.Priority: -
Category:Good fit for:iConquerMS
Does the effectiveness of the COVID-19 vaccines differ based on duration of treatment with a B-cell depleting drug?
Priority:Research Summary:
Key Takeaway: While more study is needed, there appears to be a decreased antibody response the longer someone has been on Sphingosine 1-phosphate receptor modulators (Gilenya®, Mayzent®, Zeposia®, Ponvory™) and anti-CD20 therapy (Ocrevus®, Kesimpta®, Rituxan® and biosimilars).
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
Specifics
One study (Satyanarayan et al. 2022) found that 72.4% of people on Sphingosine 1-phosphate receptor modulators had an antibody response from COVID-19 vaccination. However, a longer treatment duration (an average of 2274 days) was associated with not having an antibody (or “B-cell”) response. B-cells are a type of blood cell that create antibodies. B-cells are responsible for the initial immune response against a COVID-19 infection.
This study also found that only 37.6% of people with MS on anti-CD20 monoclonal antibody therapy had a positive antibody response after COVID-19 vaccination. People who had been on anti-CD20 therapy less than a year had a greater chance of a positive antibody response compared to those on the therapy a year or longer.
Other studies also confirm the association between length of time on these two types of therapies and reduced antibody response.
It is important to note that vaccination may still create a T-cell immune response, which helps reduce severe illness and hospitalization from COVID-19 infection. T-cells directly destroy infected cells and help reduce severe illness and hospitalization from COVID-19 infection. Few studies have assessed levels of T-cell immunity.
If you are taking the following disease modifying therapies (DMTs), discuss with your medical team the best COVID-19 vaccination and booster strategy:
- Sphingosine 1-phosphate receptor modulators (Gilenya®, Mayzent®, Zeposia®, Ponvory™)
- Alemtuzumab (Lemtrada®)
- Anti-CD20 monoclonal antibodies (Ocrevus®, Kesimpta®, Rituxan® and biosimilars)
SOURCES
- Satyanarayan, S., Safi, N., Sorets, T., Filomena, S., Zhang, Y., Klineova, S., ... & Sand, I. K. (2022). Differential antibody response to COVID-19 vaccines across immunomodulatory therapies for multiple sclerosis. Multiple Sclerosis and Related Disorders, 62, 103737. https://pubmed.ncbi.nlm.nih.gov/35533419/
- Holroyd KB, Healy BC, Conway S, Houtchens M, Bakshi R, Bhattacharyya S, Bose G, Galetta K, Kaplan T, Severson C, Singhal T, Stazzone L, Zurawski J, Polgar-Turcsanyi M, Saxena S, Paul A, Glanz BI, Weiner HL, Chitnis T. (2022). Humoral response to COVID-19 vaccination in MS patients on disease modifying therapy: Immune profiles and clinical outcomes. Mult Scler Relat Disord. 2022 Nov;67:104079. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9330583/
- Sabatino JJ Jr, Mittl K, Rowles WM, McPolin K, Rajan JV, Laurie MT, Zamecnik CR, Dandekar R, Alvarenga BD, Loudermilk RP, Gerungan C, Spencer CM, Sagan SA, Augusto DG, Alexander JR, DeRisi JL, Hollenbach JA, Wilson MR, Zamvil SS, Bove R. (2022). Multiple sclerosis therapies differentially affect SARS-CoV-2 vaccine-induced antibody and T cell immunity and function. JCI Insight. Feb 22;7(4):e156978. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8876469/
-
Category:Good fit for:iConquerMS
Do the COVID-19 vaccines have specific effects on people with MS that haven’t been observed with other types of vaccines? If so, what is responsible for these differences?
Priority:Research Summary:
Key Takeaway: Studies have not addressed this question yet. However, the evidence to date shows that most people with MS experience the same side effects and vaccine benefits as people without MS. For more information on COVID-19 vaccine side effects click here.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:iConquerMS
Should people with MS on B-cell depleting therapies be tested for antibodies after being fully vaccinated as part of standard clinical care?
Priority:Research Summary:
Key Takeaway: Currently, there is no guidance to support COVID-19 antibody testing as part of clinical care. In fact, the US Food and Drug Administration (FDA) states that the antibody test should not be used to assess a person’s level of immunity against COVID-19. For more information on the topic of antibody testing, see here.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
SOURCES:
- US FDA: https://www.fda.gov/medical-devices/safety-communications/antibody-testing-not-currently-recommended-assess-immunity-after-covid-19-vaccination-fda-safety/
- Barouch DH. (2022). Covid-19 Vaccines - Immunity, Variants, Boosters. N Engl J Med. Sep 15;387(11):1011-1020. https://www.nejm.org/doi/full/10.1056/NEJMra2206573
-
Category:Good fit for:iConquerMS
Any improvements in symptoms in MS patients after being vaccinated against COVID.
Priority:Research Summary:
Key Takeaway: Currently, there is no evidence about this topic. The iConquerMS vaccination study COVER-MS may shed light on this topic in the future. Follow for updates here.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:iConquerMS
Among patients who don't mount a high antibody response to vaccination, would an extra booster dose be helpful?
Priority:Research Summary:
Key Takeaway: Currently, there is no federal guidance recommending boosters based on the measurement of antibody levels. However, because immune response lessens with time, the US Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) recommend that older people and people with weaker immune systems get additional vaccine boosters. This is mainly because of the increased risk of severe illness and hospitalization among this group of people. Having MS does not necessarily mean you have a weakened immune system. To see if an additional booster is needed for you, check the CDC website.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:iConquerMS
Do the COVID-19 vaccines have the potential to reactivate dormant MS symptoms?
Priority:Research Summary:
Key Takeaway: Currently, there is no evidence about this topic. The iConquerMS vaccination study COVER-MS may shed light on this topic in the future. Follow for updates here.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:Other Researchers
Could the COVID-19 vaccine trigger the onset of MS in those who are already at a higher risk of developing it, such as direct relatives of people diagnosed with MS?
This would mean tracking or gathering info on direct-line relatives and whether they show symptoms or get diagnosed with MS at a later date.Priority:Research Summary:
Key Takeaway: There is no evidence that COVID-19 vaccines trigger MS onset or relapse or worsen MS symptoms. There are now a few documented cases of MS diagnosis soon after COVID-19 vaccination. However, there is no evidence that these MS cases are because of COVID-19 vaccination. Studies continue to assess any linkages between COVID-19, the COVID-19 vaccine and relapses.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:iConquerMS
Does the COVID-19 vaccine have the potential to help resolve residual neurological symptoms in people with MS, based on evidence of improvement in fatigue and cognitive issues seen in COVID long haulers?
I would like to know if individuals with MS are being tracked for symptom improvement as well after being vaccinated. https://www.medscape.com/viewarticle/947592#vp_1Priority:Research Summary:
Key Takeaway: Currently, there is no evidence about this topic. The iConquerMS vaccination study COVER-MS may shed light on this topic in the future. Follow for updates here.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:Other Researchers
How should patients proceed if they are having a relapse when their 2nd vaccine dose is due?
I'd like further information about this especially for a relapse that presently does not require steroids.Priority:Research Summary:
Key Takeaway: Vaccine timing after a relapse can vary and it is best to discuss with your doctor.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
Specifics on timing
It is always important to discuss vaccine timing with your neurologist or health care provider. In general (not specific to COVID-19 vaccines), the National MS Society recommends delaying vaccination until relapse symptoms have resolved or are not getting worse. If the relapse is serious (affects your ability to carry out activities), the National MS Society recommends delaying any vaccinations until 4 to 6 weeks after the relapse began. However, these guidelines are not specific to COVID-19 vaccines and are based on the American Academy of Neurology’s 2019 MS Practice Guidelines.
The UK MS Society recommends waiting until two weeks after completing steroid treatment for a relapse before getting the COVID-19 vaccine or booster.
SOURCES
- National MS Society: https://www.nationalmssociety.org/Living-Well-With-MS/Diet-Exercise-Healthy-Behaviors/Vaccinations
- UK MS Society: https://www.mssociety.org.uk/care-and-support/coronavirus-care-and-support/ms-and-covid-19-vaccines
- American Academy of Neurology: Farez, M. F., Correale, J., Armstrong, M. J., Rae-Grant, A., Gloss, D., Donley, D., ... & Narayanaswami, P. (2019). Practice guideline update summary: Vaccine-preventable infections and immunization in multiple sclerosis: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology, 93(13), 584-594. https://pubmed.ncbi.nlm.nih.gov/31462584/
-
Category:Good fit for:iConquerMS
What strategies work best to prevent side effects of COVID-19 vaccines from worsening MS symptoms?
For example, how can someone who is heat sensitive mitigate the impact of fever caused by the vaccine?Priority:Research Summary:
Key Takeaway: Currently, there is no evidence that COVID-19 vaccines worsen MS symptoms and are likely to trigger an MS relapse. Further, the side effects from vaccination appear to be the same among people with MS as the general population.
The US Centers for Disease Control and Prevention advises people experiencing a fever after receiving the COVID-19 vaccine to drink fluids, dress in comfortable clothing, and consult their doctor about taking an over-the-counter fever-reducing medicine.
To learn more about COVID-19 vaccine side effects among people with MS compared to the general population, click here.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
-
Category:Good fit for:Other Researchers
Are symptoms from the vaccination stronger among MS sufferers?
Priority:Research Summary:
Key takeaway: People with MS report similar vaccination side effects as people without MS
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 21, 2023.
Reported side effects for people with MS
The iConquerMS COVER-MS study found that people with MS had similar reactions to COVID-19 vaccines as the general population. Common reactions included:
- Pain at injection site
- Fatigue
- Headache
- Malaise (a general feeling of discomfort)
After the first shot, 64% of survey respondents reported any reaction at all and 17% rated the reaction as severe. After the second shot, 74% reported any reaction at all and 22% rated the reaction as severe.
Factors linked to report of a reaction
Reactions after the first shot
- The report of any reaction after the first shot was more likely if the respondent was younger, female, a person of color, had a previous COVID-19 infection, or had the Oxford-Astra-Zeneca vaccine.
- A severe vaccine response was more likely among those who were younger, female, had greater physical limitations, and who had the Oxford-Astra-Zeneca vaccine.
- Participants taking Gilenya, Mayzent, or Zeposia MS drug treatments were less likely to report a vaccine reaction.
Reactions after the second shot
- Reports of reactions after the second shot were similar to the first shot.
- People taking Gilenya, Mayzent, Zeposia, Tecfidera, and Vumerity MS drug treatments were less likely to report any vaccine reaction.
- Respondents who were younger and had the Moderna vaccine were more likely to report severe vaccine reactions.
SOURCES
iConquerMS
You may have taken part in this study – COVER-MS! The data for this study came from a survey fielded on iConquerMS.
- https://www.iconquerms.org/research-projects
- https://www.iconquerms.org/cover-ms-description
- https://www.iconquerms.org/sites/default/files/acp-images/COVER-MS%20Initial%20Findings%202021092
- https://www.iconquerms.org/sites/default/files/acp-images/COVER-MS-Report.pdf
Briggs, F. B. S., Mateen, F. J., Schmidt, H., Currie, K. M., Siefers, H. M., Crouthamel, S., ... & McBurney, R. N. (2022). COVID-19 vaccination reactogenicity in persons with multiple sclerosis. Neurology-Neuroimmunology Neuroinflammation, 9(1).
https://pubmed.ncbi.nlm.nih.gov/34753828/National MS Society
https://www.nationalmssociety.org/About-the-Society/News/COVID-19-Vaccine-Reactions-in-People-with-MS-Simil#:~:text=Among%20719%20people%20with%20MS,seen%20in%20the%20general%20population -
Category:Good fit for:Other Researchers
Is anyone planning on monitoring covid patients to see if COVID-19 causes a rise in MS diagnoses?
Since covid moves into the CNS, what will be the short-term and long-term consequences for patients both with and without MS. Could this be a new environmental trigger for MS?Priority: -
Category:Good fit for:iConquerMS
What are the long term side effects of COVID-19 for people with MS?
Priority:Research Summary:
Key Takeaway: Most people with MS recover fully from a COVID-19 infection. However, one study (Garjani), using data from the United Kingdom MS Register, showed that around 12% of non-hospitalized people with MS had prolonged COVID-19 symptoms for 12 or more weeks. The most common symptoms at 12+ weeks included fatigue, cough/breathing difficulties, muscle pain, and digestive problems.
Another study (Conway) found that having a COVID-19 infection may put people with MS at risk of new or worsened MS symptoms and possibly relapses. However, not all studies have found that COVID-19 infections increase the risk of MS relapses. Taking an MS disease-modifying therapy (DMT) may reduce the chance of a relapse or new or worsened symptoms.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on April 23, 2023.
SOURCES:
- Garjani A, Middleton RM, Nicholas R, Evangelou N. Recovery From COVID-19 in Multiple Sclerosis: A Prospective and Longitudinal Cohort Study of the United Kingdom Multiple Sclerosis Register. Neurol Neuroimmunol Neuroinflamm. 2021 Nov 30;9(1):e1118. doi: 10.1212/NXI.0000000000001118. PMID: 34848503; PMCID: PMC8631790.
- Conway, S. E., Healy, B. C., Zurawski, J., Severson, C., Kaplan, T., Stazzone, L., ... & Houtchens, M. K. (2022). COVID-19 severity is associated with worsened neurological outcomes in multiple sclerosis and related disorders. Multiple Sclerosis and Related Disorders, 63, 103946.
-
Category:Good fit for:iConquerMS
Has the COVID-19 era resulted in any positive changes for the MS community?
For example, has increased availability of telehealth been helpful?Priority: -
Category:Good fit for:iConquerMS
Does infection with COVID-19 have the potential to cause the onset of MS or trigger an MS relapse?
Priority: -
Category:Good fit for:iConquerMS
Has the COVID-19 pandemic affected future work feasibility for those with MS?
I have not seen any studies of returning to work after the Pandemic for those with MS. For me specifically, it is impossible for me, in all respects. I had been at my job for 24 years and they had made huge accommodations for me as I progressed with my MS over this time. My place of work closed (for good) due to the pandemic and I am currently unable to do what I am trained to do if I were to apply for the same type of work. Any current workplace would not be able to reasonably offer the same accommodations. The pandemic essentially ended my working ability.Priority: -
Category:Good fit for:iConquerMS
Has COVID-19 changed preference of DMT drug choice for people with MS?
From the change or delays in timing of infusion or temporary change of DMT usage to accommodate vaccination, is there any effect on choice or preference of DMT for MS patients?Priority: -
Category:Good fit for:iConquerMS
How has the COVID-19 Pandemic affected MS management and care?
Specifically, I'm interested in knowing (1) how many people missed in-person neurology exams/MRIs that may have picked up on subtle/subclinical disease progression? (2) how many patients stopped, interrupted, or altered the dosing schedule of their DMT? (3) have patients become deconditioned due to less access to exercise/PT programs? If so, what are the physical and mental effects?Priority:Research Summary:
Key takeaway: In the first year of the COVID-19 pandemic (2020), medical and rehabilitation care for people with MS was disrupted. It is not yet clear though how much these disruptions affected the actual health of people with MS. Although MS care was disrupted, it may not have been disrupted more than regular health care services. There is also little information about the extent to which MS management and care has been disrupted from 2021 onwards.
Each heading below provides findings by topic. Unless otherwise stated, these studies reported about different time intervals throughout 2020.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 21, 2023.
Access to MS medical services
A survey conducted by iConquerMS on the impact of COVID-19 showed that:
- 64% of survey participants canceled or postponed medical visits
- Women canceled or postponed medical visits at higher rates than men
- 34% of survey participants canceled or postponed a neurologist’s visit
- 17% of survey participants canceled or postponed an MRI
- 77% of survey participants canceled or postponed a non-neurologist medical visit
- 33% of survey participants canceled or postponed a laboratory visit
A National MS Society survey with providers found that:
- Over 50% of MS providers recommended that their patients obtain MRIs less frequently than they did before the pandemic began
- More than 40% of MS providers recommended less frequent laboratory studies
The European Committee for Treatment and Research in MS (ECTRIMS) (Portaccio) conducted a survey of 360 neurologists in Europe and concluded that the pandemic disrupted the standard of MS care. Survey findings included:
- 98% of neurologists who responded said they were restricted in how they provided patient care
- Only 19% of neurologists reported that MRIs were performed regularly
- Only 30% of neurologists said that laboratory tests were performed regularly
- Survey respondents reported that 38% of clinical trials were suspended, 32% of clinical trials were postponed, and 30% of clinical trials continued regularly
Another study (Chen) compared disruptions in care experienced by people with MS to people without MS and found that:
- 38% to 50% of people with MS reported experiencing disruptions in their MS and non-MS medical care.
- Greater proportions of people without MS (68%) reported disruptions to medical care.
- 20% to 33% of people with MS reported disruptions in their mental health care.
MS drug treatment changes
This section looks at the impact of the pandemic on MS drug treatments, often referred to as disease modifying therapies, or “DMTs.” DMTs modify the immune system to treat MS and are different from treatments that address individual symptoms like pain.
- 10% of the iConquerMS survey participants reported making a change to their MS drug treatment type, dose, or dosing schedule due to COVID-19.
- 11% of the iConquerMS survey participants reported experiencing difficulties and delays in accessing MS drug treatments.
- A National MS Society survey with providers reported that more than 80% of MS neurologists believed that COVID-19 may have changed how they prescribed or recommended DMTs.
- A survey of US and Canadian neurologists (Mateen) found that 65% of respondents reported changing DMT prescriptions in some way:
- 49% reported deferring one or more doses of a DMT
- 34% reported changing the dosing interval
- 20% reported changing to home infusions
- 9% reported switching patients to a different DMT
- 8% said they discontinued patients’ DMTs altogether
- In the ECTRIMS survey of 360 neurologists in Europe (Portaccio), 70% of respondents reported that treatment with DMTs was altered in some way.
Telehealth use
- An NMSS survey (Morrison) with providers reported that more than 95% of MS providers used telehealth to some extent to provide patient care.
- A survey of US and Canadian neurologists (Mateen) found telemedicine was adopted at a fast pace.
- The ECTRIMS survey of 360 neurologists in Europe (Portaccio) found that 92% of neurologists who responded used telemedicine either primarily or exclusively.
- Findings from a survey (Chen) about the use of telehealth among people with MS during Sept-October 2020 showed that:
- Higher proportions of people with MS attended telehealth visits than people without MS
- Telehealth visits were most frequently used for mental health care
MS rehabilitation services
The European Rehabilitation in MS (RIMS) network conducted two surveys with MS providers (Brichetto, Kahraman). The findings show that:
- Up to 81% of European rehabilitation services reduced their activity or were closed at the time of the survey (July-September 2020)
- 33.5% of physical therapists reported that aerobic training or conditioning exercises were reduced or unavailable throughout 2020
- Most physical therapists reported that the COVID-19 pandemic affected their regular use of intervention tools or therapeutic approaches throughout 2020
- 27% of physical therapists reported limited use of technologies such as bodyweight supported walking throughout 2020
- 23% of physical therapists reported limited use of computerized postural control training throughout 2020
- 22% of physical therapists reported limited practice with orthotic devices throughout 2020
- 19% of physical therapists reported limited use of biofeedback/electrical stimulators throughout 2020
- 21.9% of physical therapists reported that hydrotherapy sessions were either reduced or unavailable throughout 2020
- 4.9% of the physical therapists reported increased use of relaxation/mind-body techniques (i.e., yoga, tai-chi) throughout 2020
- 14.4% of physical therapists reported an increase in fatigue management programs throughout 2020
- 13.0% of physical therapists reported an increase in activities of daily living training throughout 2020
Quality of life issues
The iConquerMS survey found that the pandemic impacted some quality-of-life measures:
- 4% of women and 2% of men with MS lost their jobs
- People who self-quarantined (37% of participants) were more likely to report that the pandemic had a negative impact on their personal finances, exercise, and diet compared to those who did not self-quarantine.
Another survey (Goverover) compared changes in daily life activities between people with MS and people without MS (in Spring-Fall 2020) and found that:
- Compared to before the pandemic, people with MS engaged in fewer activities of daily living compared to people without MS
- People with MS had lower scores on quality of life compared to people without MS
- The more activities participants reported doing, the higher their quality of life scores
Another study (Stojanov) compared quality of sleep and fatigue pre-pandemic and during the pandemic. They found that:
- People with MS had worse quality of sleep and greater fatigue than people without MS
- Quality of sleep and fatigue was worse during the pandemic compared to pre-pandemic
Physical activity
The European Rehabilitation in MS (RIMS) network fielded a survey in May to July 2021 with 3725 people with MS living in Australia, Belgium, Czech Republic, Ireland, Israel, Italy, Norway, Serbia, Spain, Turkey, and the United Kingdom (Kahraman et al. 2022). The findings showed that:
- Physical activity levels fell from 84% of participants pre-pandemic to 75% during the pandemic
- Activities in physiotherapy centers, gyms, or pools decreased the most
- Walking increased from 27% prepandemic to 33% during the pandemic
- 58% of respondents said they did not use technology to support physical activity during the pandemic
- Of the 42% who used technology to support physical activity, 24% used wearables
Other studies in the United States also show that physical activity levels early in the pandemic likely decreased (Becker et al. 2022).
Sources
iConquerMS
Vogel, A. C., Schmidt, H., Loud, S., McBurney, R., & Mateen, F. J. (2020). Impact of the COVID-19 pandemic on the health care of> 1,000 People living with multiple sclerosis: A cross-sectional study. Multiple sclerosis and related disorders, 46, 102512.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7501524/
National MS Society
Morrison EH, Michtich K, Hersh CM. How the COVID-19 Pandemic has changed multiple sclerosis clinical practice: Results of a nationwide provider survey. Mult Scler Relat Disord. 2021 Jun;51:102913. doi: 10.1016/j.msard.2021.102913. Epub 2021 Mar 18. PMID: 33839482; PMCID: PMC7969827.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7969827/
Other
-
Becker, Heather; Stuifbergen, Alexa K.; Lim, Sungju; Kesler, Shelli R.. Health Promotion, Functional Abilities, and Quality of Life Before and During COVID-19 in People With Multiple Sclerosis. Nursing Research 71(2):p 84-89, 3/4 2022. | DOI: 10.1097/NNR.0000000000000573.
https://pubmed.ncbi.nlm.nih.gov/34967826/ -
Brichetto, G., Tacchino, A., Leocani, L., & Kos, D. (2022). Impact of Covid-19 emergency on rehabilitation services for Multiple Sclerosis: An international RIMS survey. Multiple Sclerosis and Related Disorders, 67, 104179.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9474392/ -
Chen MH, Goverover Y, Botticello A, DeLuca J, Genova HM. Healthcare Disruptions and Use of Telehealth Services Among People With Multiple Sclerosis During the COVID-19 Pandemic. Arch Phys Med Rehabil. 2022 Jul;103(7):1379-1386. doi: 10.1016/j.apmr.2021.12.028. Epub 2022 Jan 31. PMID: 35093328; PMCID: PMC8801263.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8801263/ Goverover, Y., Chen, M. H., Botticello, A., Voelbel, G. T., Kim, G., DeLuca, J., & Genova, H. M. (2022). Relationships between changes in daily occupations and health-related quality of life in persons with multiple sclerosis during the COVID-19 pandemic. Multiple Sclerosis and Related Disorders, 57, 103339.
https://www.msard-journal.com/article/S2211-0348(21)00606-4/fulltext-
Kahraman T, Rasova K, Jonsdottir J, Medina CS, Kos D, Coote S, Tacchino A, Smedal T, Arntzen EC, Quinn G, Learmonth Y, Pedulla L, Moumdjian L, Kalron A. The impact of the COVID-19 pandemic on physical therapy practice for people with multiple sclerosis: A multicenter survey study of the RIMS network. Mult Scler Relat Disord. 2022 Jun;62:103799. doi: 10.1016/j.msard.2022.103799. Epub 2022 Apr 10. PMID: 35428030; PMCID: PMC8994702.
https://www.msard-journal.com/article/S2211-0348(22)00684-8/pdf -
Mateen, F.J., Rezaei, S., Alakel, N. et al. Impact of COVID-19 on U.S. and Canadian neurologists’ therapeutic approach to multiple sclerosis: a survey of knowledge, attitudes, and practices. J Neurol 267, 3467–3475 (2020).
https://doi.org/10.1007/s00415-020-10045-9 -
Portaccio, E., Fonderico, M., Hemmer, B., Derfuss, T., Stankoff, B., Selmaj, K., ... & Amato, M. P. (2022). Impact of COVID-19 on multiple sclerosis care and management: Results from the European Committee for Treatment and Research in Multiple Sclerosis survey. Multiple Sclerosis Journal, 28(1), 132-138.
https://pubmed.ncbi.nlm.nih.gov/33764197/ -
Stojanov, A., Vojinovic, S., Stojanov, J., Malobabic, M., Stevic, M., Milosevic, V., & Stanojevic, G. (2021). Quality of sleep and fatigue in patients with the relapsing-remitting multiple sclerosis during the coronavirus disease-2019 pandemic. Clinical Neurology and Neurosurgery, 205, 106640.
https://pubmed.ncbi.nlm.nih.gov/33901751/
Category:Good fit for:iConquerMSHave people with MS experienced new cognitive changes after recovering from COVID-19?
There is emerging evidence that some people who have recovered from COVID-19 have experienced cognitive changes which are similar to the cognitive changes that people with MS experience. It would be interesting to understand the prevalence of these post-COVID cognitive changes among people living with MS.Priority:Research Summary:
Key Takeaway: More research is needed, especially to look at cognitive changes. There is some evidence that some people with MS who had moderate or severe cases of COVID-19 have an increase in neurologic symptoms including pseudo relapses, worse fatigue, and worse sensory symptoms. Some people with MS may also develop new MS symptoms.
One small study (Shanley) followed people who were experiencing neurologic effects following COVID infection. In this group, which included a few people with MS, memory impairment (68.8%) and decreased concentration (61.5%) were the most common cognitive symptoms at six months.Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on August 3, 2023.
SOURCES:
- Garjani A, Middleton RM, Nicholas R, Evangelou N. Recovery From COVID-19 in Multiple Sclerosis: A Prospective and Longitudinal Cohort Study of the United Kingdom Multiple Sclerosis Register. Neurol Neuroimmunol Neuroinflamm. 2021 Nov 30;9(1):e1118. doi: 10.1212/NXI.0000000000001118. PMID: 34848503; PMCID: PMC8631790.
- Conway, S. E., Healy, B. C., Zurawski, J., Severson, C., Kaplan, T., Stazzone, L., ... & Houtchens, M. K. (2022). COVID-19 severity is associated with worsened neurological outcomes in multiple sclerosis and related disorders. Multiple Sclerosis and Related Disorders, 63, 103946.
- Shanley JE, Valenciano AF, Timmons G, Miner AE, Kakarla V, Rempe T, Yang JH, Gooding A, Norman MA, Banks SJ, Ritter ML, Ellis RJ, Horton L, Graves JS. Longitudinal evaluation of neurologic-post acute sequelae SARS-CoV-2 infection symptoms. Ann Clin Transl Neurol. 2022 Jul;9(7):995-1010. doi: 10.1002/acn3.51578. Epub 2022 Jun 15. PMID: 35702954; PMCID: PMC9268882.
Category:Good fit for:iConquerMSHas COVID-19 isolation affected people with MS?
If so, do the effects vary based on age, gender, race, ethnicity or MS subtype?Priority:Research Summary:
Key takeaway:Findings are mixed on the impact of lockdowns and quarantine for people with MS. Some studies report a worsening of mental health for people with MS including increased rates of depression and loneliness. Some studies also report that people with MS experienced worsening disability and increased fatigue. In one study, people with MS also decreased daily life activities such as exercise.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on April 23, 2023.
Additional information
The mixed findings about the impact of lockdown and quarantine during the early pandemic might be because of the design of studies. Most studies do not compare findings to pre-pandemic levels. For example, depression is a common symptom of MS, and it is unclear if rates of depression increased among people with MS. However, depression did increase in the general population.
For more information about the impact of lockdowns and quarantines on MS healthcare and other aspects of living with MS, please see the answer to the question "How has the COVID-19 pandemic affected MS management and care?"
SOURCES:
- Altieri, M., Fratino, M., Pauri, F., Conte, A., & Frontoni, M. (2021). Effect of COVID-19 Lockdown on Patients with Multiple Sclerosis: an Italian Survey. Journal of Neurology Research Reviews & Reports. SRC/JNRRR-151. DOI: doi. org/10.47363/JNRRR/2021 (3), 138, 0-4.
- Koc ER, Demir AB, Topaloglu E, Turan OF, Ozkaya G. Effects of quarantine applied during the COVID-19 pandemic on mental health and quality of life in patients with multiple sclerosis and healthy controls. Neurol Sci. 2022 Apr;43(4):2263-2269. doi: 10.1007/s10072-022-05901-7. Epub 2022 Jan 21. PMID: 35061136; PMCID: PMC8777171.
- Vercellino, M., Bosa, C., Alteno, A. et al. Impact of COVID-19 lockdown on progressive multiple sclerosis patients.Neurol Sci 43, 2943–2946 (2022). https://doi.org/10.1007/s10072-022-05909-z
- Garjani A, Hunter R, Law GR, et al. Mental health of people with multiple sclerosis during the COVID-19 outbreak: A prospective cohort and cross-sectional case–control study of the UK MS Register. Multiple Sclerosis Journal. 2022;28(7):1060-1071. doi:10.1177/13524585211020435
- Donzé, C., Massot, C., Guenot, M., & Hautecoeur, P. (2022). CONFISEP: Impact of the Covid-19 pandemic lockdown on patients with multiple sclerosis in the north of France. Revue Neurologique, 178(1-2), 151-155.
- Goverover, Y., Chen, M. H., Botticello, A., Voelbel, G. T., Kim, G., DeLuca, J., & Genova, H. M. (2022). Relationships between changes in daily occupations and health-related quality of life in persons with multiple sclerosis during the COVID-19 pandemic. Multiple Sclerosis and Related Disorders, 57, 103339.
Category:Good fit for:iConquerMSAre there any mental health changes associated with COVID-19 infection in people with MS?
If so, do any mental health changes vary by race or ethnicity in people with MS?Priority:Research Summary:
Key Takeaway: People with MS generally have higher levels of mental health conditions such as depression, anxiety, and stress than people without MS. This difference continued during the pandemic. Studies that measured whether mental health conditions increased due to the pandemic show mixed findings. Some studies show that people with MS experienced an increase, whereas others report no change. Most studies only look at the initial wave of COVID. More studies are needed to assess mental health impacts over a longer period of time. There is no data that looks at changes by race and ethnicity.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on April 19, 2023.
Additional information
People with MS continued to experience high rates of depression, anxiety, and stress during the pandemic compared to people without MS. Many studies do not compare the rates to before the pandemic, therefore it is difficult to tell if mental health changed due to the pandemic.
Several articles that combined data from multiple studies (called a “meta-analysis”) showed no change in mental health conditions for people with MS. These articles suggest a few reasons why mental health levels did not change. First, because people with MS already have high levels of mental health conditions. Second, because people with MS may be used to restrictions in activities and have developed strategies to cope that helped them during lockdowns. Third, countries with active MS associations activated additional supports for people with MS during the initial lockdown phases of the pandemic.
However, some studies do indicate that there was an increase in depression, anxiety, and loneliness during the initial phase of the pandemic (Strober et al. 2022; Ling et al. 2022; Vercellino et al. 2022).
SOURCES:
- Altieri, M., Capuano, R., Bisecco, A., d'Ambrosio, A., Buonanno, D., Tedeschi, G., ... & Gallo, A. (2022). The psychological impact of Covid-19 pandemic on people with Multiple Sclerosis: a meta-analysis.Multiple Sclerosis and Related Disorders, 61, 103774.
- Zarghami, A., Hussain, M. A., Campbell, J. A., Ezegbe, C., van der Mei, I., Taylor, B. V., & Claflin, S. B. (2022). Psychological impacts of COVID-19 pandemic on individuals living with multiple sclerosis: a rapid systematic review. Multiple Sclerosis and Related Disorders, 59, 103562.
- Strober L, Weber E, Lequerica A, Chiaravalloti N. Surviving a global pandemic: The experience of depression, anxiety, and loneliness among individuals with multiple sclerosis. Multiple Sclerosis and Related Disorders. 2022 Feb;58:103497. DOI: 10.1016/j.msard.2022.103497. PMID: 35066271; PMCID: PMC8742660.
- Ling, S., Moss, B., Wang, Z., & Sullivan, A. B. (2022). Exploring the impact of the COVID-19 pandemic on social isolation and mental health in people with MS. Multiple Sclerosis and Related Disorders, 68, 104186.
- Vercellino, M., Bosa, C., Alteno, A. et al. Impact of COVID-19 lockdown on progressive multiple sclerosis patients. Neurol Sci 43, 2943–2946 (2022). https://doi.org/10.1007/s10072-022-05909-z
- Garjani A, Hunter R, Law GR, et al. Mental health of people with multiple sclerosis during the COVID-19 outbreak: A prospective cohort and cross-sectional case–control study of the UK MS Register. Multiple Sclerosis Journal. 2022;28(7):1060-1071. doi:10.1177/13524585211020435
Category:Good fit for:iConquerMSDo any MS drugs appear to affect the course or severity of COVID-19?
Priority:Research Summary:
Key Takeaway: People on anti-CD20 therapies (rituximab and ocrelizumab) may be at an increased risk of severe COVID-19 outcomes, such as hospitalization and intensive care unit (ICU) admission. The longer a person is on rituximab, the greater the likelihood of experiencing worse COVID-19 outcomes. In addition to increased chance for hospitalization and ICU admission, people on rituximab were also more likely to be put on a ventilator. It is not clear what impact vaccine status has on the likelihood of severe outcomes while on these MS drugs.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 16, 2023..
SOURCES:
National Multiple Sclerosis Society:
Other Sources
- Barzegar, M., Houshi, S., Sadeghi, E., Hashemi, M. S., Pishgahi, G., Bagherieh, S., ... & Zabeti, A. (2022). Association of disease-modifying therapies with COVID-19 susceptibility and severity in patients with multiple sclerosis: a systematic review and network meta-analysis. Multiple sclerosis international, 2022.
- Schiavetti, I., Ponzano, M., Signori, A., Bovis, F., Carmisciano, L., & Sormani, M. P. (2022). Severe outcomes of COVID-19 among patients with multiple sclerosis under anti-CD-20 therapies: A systematic review and meta-analysis. Multiple Sclerosis and Related Disorders, 57, 103358.
- Barzegar, M., Houshi, S., Sadeghi, E., Hashemi, M. S., Pishgahi, G., Bagherieh, S., ... & Zabeti, A. (2022). Association of disease-modifying therapies with COVID-19 susceptibility and severity in patients with multiple sclerosis: a systematic review and network meta-analysis. Multiple sclerosis international, 2022.
- Simpson-Yap, S., De Brouwer, E., Kalincik, T., Rijke, N., Hillert, J. A., Walton, C., ... & Peeters, L. (2021). Associations of disease-modifying therapies with COVID-19 severity in multiple sclerosis. Neurology, 97(19), e1870-e1885.
Category:Good fit for:Other ResearchersCompared to the general population, are people with MS at greater risk for becoming infected with COVID-19?
Also, does the risk of COVID-19 infection vary by race or ethnicity in people with MS?Priority:Research Summary:
Key Takeaway: People with MS are not at greater risk for getting COVID-19 compared to the general population. However, there are risk factors that can increase the likelihood that a person with MS will have a severe COVID-19 case.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 21, 2023.
Risk factors for a severe COVID-19 infection
You may have a greater chance of a severe case of COVID-19 if you:- Have progressive MS
- Are older in age
- Are a man
- Are Black or African American
- Use a mobility device or a wheelchair
- Have been diagnosed with obesity (body mass index of 30 or higher)
- Have other chronic health conditions, like diabetes or heart disease, in addition to MS
- Take steroid medications
- Take certain disease modifying therapies called anti-CD20 monoclonal antibodies (Ocrevus and Rituxan and biosimilars)
SOURCES:
National MS Society
Other sources:
- Ghajarzadeh, M., & Bonavita, S. (2020). Are patients with multiple sclerosis (MS) at higher risk of COVID-19 infection? Neurological Sciences, 41(9), 2315-2316.
Category:Good fit for:iConquerMSDo opinions and preferences about COVID-19 vaccination vary by race or ethnicity in people with MS?
Priority:Research Summary:
Key Takeaway: There are a handful of studies that assess COVID-19 vaccine willingness among people with MS. Racial and ethnic groups are underrepresented in these studies making it difficult to compare vaccine willingness by race and ethnic group. However, there is some evidence to suggest COVID-19 vaccine willingness is greater among people with MS who are white. This finding is the same as COVID-19 vaccine willingness among the general population, which researchers think reflects both safety concerns and mistrust.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on July 25, 2023.
Characteristics linked to vaccine hesitancy
An iConquerMS survey about the impact of COVID-19 was launched in December 2020. Some of the questions in this survey asked people with MS about their COVID-19 vaccination experiences and attitudes. The findings from 701 respondents showed that 23% were hesitant about getting the vaccine. Those who were hesitant were younger in age, self-identified as “other” race, and had less self-reported disability. The study defined racial group as “white” or “other” due to the small number of participants who self-reported racial group as something other than white (only 2%, or 15 people).
Characteristics linked to vaccine willingness
In the iConquerMS survey, 76.6% of participants said they wanted the COVID-19 vaccine. Willingness to get the vaccine was linked with being willing to get the flu vaccination and being older in age. A follow up survey after the vaccine became available was conducted in April-June 2021. Of the 381 people who responded, all had received at least one COVID-19 shot. These respondents represented 59.8% of the original vaccine willing group and 36.6% of the vaccine hesitant group.
A study conducted by the University of Washington between April 2020 and May 2020 found that only 66% of those surveyed were willing to get a COVID-19 vaccine. Compared to those who were hesitant to get the vaccine, people who were willing had a higher level of education, were more likely to be white, had a history of getting the flu vaccine, had greater trust in the US Centers for Disease Controls and Prevention (CDC), and believed that they were at great risk of getting COVID-19.
Globally, studies report similar findings. Specifically, older age, higher education, a perception of increased risk of COVID-19, and previous flu vaccination are linked to vaccine willingness. Additional factors linked to vaccine willingness include being female, not having progressive MS, having another chronic condition, and receiving information about the vaccine. Vaccine willingness among people with MS was higher in the US (78%) compared to Portugal (64%), Israel (70%), and Iran (64%) but lower than the United Kingdom (94%) and Ireland (90%).
Reasons for vaccine hesitancy
In the iConquerMS survey, people were hesitant about getting the COVID-19 vaccine mostly because of concerns about how safe and effective it was. Some people were also concerned about the effect the vaccine might have on MS symptoms and MS therapies. Also, trust about the vaccine program was low among the vaccine hesitant group.
Globally, COVID-19 vaccine hesitancy among people with MS is associated with concerns about the safety and effectiveness of the vaccine and with having fewer concerns about COVID-19. Vaccine hesitant people also want more information about the vaccine, especially on its safety and effectiveness.
SOURCES:
iConquerMS:
- Uhr, L., & Mateen, F. J. (2022). COVID-19 vaccine hesitancy in multiple sclerosis: A cross-sectional survey. Multiple Sclerosis Journal, 28(7), 1072-1080.
https://pubmed.ncbi.nlm.nih.gov/34313513/ - COVER-MS study:
https://www.iconquerms.org/research-projects
https://www.iconquerms.org/cover-ms-description
Other sources:
- Ehde, D. M., Roberts, M. K., Herring, T. E., & Alschuler, K. N. (2021). Willingness to obtain COVID-19 vaccination in adults with multiple sclerosis in the United States.Multiple sclerosis and related disorders, 49, 102788.
- Yazdani, A., Mirmosayyeb, O., Ghaffary, E. M., Hashemi, M. S., & Ghajarzadeh, M. (2022). COVID-19 vaccines and patients with multiple sclerosis: willingness, unwillingness and hesitancy: a systematic review and meta-analysis. Neurological Sciences, 1-10.
- Nguyen LH, Joshi AD, Drew DA, Merino J, Ma W, Lo CH, Kwon S, Wang K, Graham MS, Polidori L, Menni C, Sudre CH, Anyane-Yeboa A, Astley CM, Warner ET, Hu CY, Selvachandran S, Davies R, Nash D, Franks PW, Wolf J, Ourselin S, Steves CJ, Spector TD, Chan AT. (2021). Racial and ethnic differences in COVID-19 vaccine hesitancy and uptake. medRxiv [Preprint]. 2021 Feb 28:2021.02.25.21252402.
- Donzé, C., Massot, C., Guenot, M., & Hautecoeur, P. (2022). CONFISEP: Impact of the Covid-19 pandemic lockdown on patients with multiple sclerosis in the north of France. Revue Neurologique, 178(1-2), 151-155.
- Marrie RA, Dolovich C, Cutter GR, Fox RJ, Salter A. Attitudes toward coronavirus disease 2019 vaccination in people with multiple sclerosis. Multiple Sclerosis Journal - Experimental, Translational and Clinical. 2022;8(2).
Category:Good fit for:iConquerMSHow well do the different COVID-19 vaccines work in people with MS?
Also, does the safety and effectiveness of these vaccines differ based on age, race, ethnicity or MS drug?Priority:Research Summary:
Key takeaway: COVID-19 vaccines are safe and effective for people with MS. However, people with MS on certain types of treatment may have decreased effectiveness and should discuss vaccination timing with their doctor.
There is no difference in effectiveness by demographic factors. There is a small increase in mild heart inflammation rates following Moderna and Pfizer vaccinations among male adolescents and young men. However, inflammation cases are rare and typically resolve with no lasting problems. A small increase in blood clot rates following Johnson & Johnson vaccination was noticed among young women. However, blood clots following vaccination remain extremely rare.
Research about COVID-19 continues to provide new information about the virus and its impact on people with MS. The information on this page was accurate at the time it was last updated on February 21, 2023.
Safety of COVID-19 vaccines among people with MS
- Healthcare experts encourage people with multiple sclerosis (MS) to get vaccinated against COVID-19.
- Available vaccines in the US are safe and not likely to cause an MS relapse.
- The iConquerMS COVER-MS study found that reactions to vaccinations for people with MS were similar to the general population.
Effectiveness of COVID-19 vaccines among people with MS
- For most people with MS, the COVID-19 vaccines work as well as the general population.
- Vaccines work by preparing the immune system to respond to viruses, bacteria, and other hazards. Vaccines stimulate different cells in the immune system, such as B and T cells, to respond if the hazard is detected in the body.
- Drugs that affect the immune system have the potential to affect how well a vaccine works.
- Most MS drug treatments (called “disease modifying therapies” or “DMTs”) do not prevent the vaccine from stimulating B cells. B cells produce antibodies which are important agents in the immune response.
- Vaccines also create a second type of immune response, called a T-cell response. A T-cell immune response helps reduce severe illness and hospitalization from COVID-19 infection. More studies are needed to understand if MS drug treatments reduce the T-cell immune response.
Therapies that may reduce COVID-19 vaccination effectiveness
The following MS drug treatments may reduce COVID-19 vaccine effectiveness because of their effect on the immune system. If you are taking one of these drugs, or considering starting one, you should discuss with your medical team the best vaccination and booster strategy:
- Sphingosine 1-phosphate receptor modulators (Gilenya®, Mayzent®, Zeposia®, Ponvory™)
- Alemtuzumab (Lemtrada®)
- Anti-CD20 monoclonal antibodies (Ocrevus®, Kesimpta®, Rituxan® and biosimilars)
Vaccine effectiveness by demographic characteristics
Demographics like age or race and ethnicity do not appear related to vaccine effectiveness. However, because immunity decreases over time, older adults (especially people over the age of 65) and those who have suppressed immune systems are at greater risk of severe illness. For this reason, the US Food and Drug Administration (FDA) and Centers for Disease Control and Prevention (CDC) recommend older people and people with weaker immune systems get additional vaccine boosters. To see if an additional booster is needed for you, check the CDC website.
Vaccine safety by demographic characteristics
There is a small increase in myocarditis (inflammation of the heart muscle) and pericarditis (inflammation of the outer lining of the heart) rates among adolescent boys and young men after vaccination with Pfizer and Moderna. Symptoms appear within a week after vaccination and respond well to treatment with typically no lasting problems.
Also, rare cases of blood clots have been noted within two weeks of vaccination with the Johnson & Johnson COVID-19 vaccine. The risk is highest for women aged between 30 and 49 who have a chance of 1 in 100,000 of getting a blood clot after vaccination with the Johnson & Johnson vaccine. According to reporting in May 2022, out of more than 18 million people who got Johnson & Johnson, 60 people reported blood clots, and nine people died as a result. Healthcare experts advise that the benefits of vaccination far outweigh these rare risks.
SOURCES
National MS Society:
- https://www.nationalmssociety.org/coronavirus-covid-19-information/covid-19-vaccine-guidance/Timing-MS-Medications-with-COVID-19-Vaccines
- https://www.nationalmssociety.org/coronavirus-covid-19-information/covid-19-vaccine-guidance/COVID-19-Vaccine-Boosters-and-Additional-Doses#section-0
- https://www.nationalmssociety.org/coronavirus-covid-19-information/covid-19-vaccine-guidance#:~:text=COVID%2D19%20vaccines%20are%20safe%20for%20people%20with%20MS,-None%20of%20the&text=The%20vaccines%20are%20not%20likely,MS%20relapse%20from%20the%20vaccine
Other sources:
- Etemadifar, M., Nouri, H., Pitzalis, M., Idda, M. L., Salari, M., Baratian, M., ... & Sedaghat, N. (2022). Multiple sclerosis disease-modifying therapies and COVID-19 vaccines: A practical review and meta-analysis. Journal of Neurology, Neurosurgery & Psychiatry.
https://pubmed.ncbi.nlm.nih.gov/35688629/ - Capone F, Rossi M, Cruciani A, Motolese F, Pilato F, Di Lazzaro V. Safety, immunogenicity, efficacy, and acceptability of COVID-19 vaccination in people with multiple sclerosis: a narrative review. (2023).Neural Regen Res. 2023 Feb;18(2):284-288.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9396498/ - Satyanarayan, S., Safi, N., Sorets, T., Filomena, S., Zhang, Y., Klineova, S., ... & Sand, I. K. (2022). Differential antibody response to COVID-19 vaccines across immunomodulatory therapies for multiple sclerosis. Multiple Sclerosis and Related Disorders62, 103737.
https://pubmed.ncbi.nlm.nih.gov/35533419/ - Holroyd KB, Healy BC, Conway S, Houtchens M, Bakshi R, Bhattacharyya S, Bose G, Galetta K, Kaplan T, Severson C, Singhal T, Stazzone L, Zurawski J, Polgar-Turcsanyi M, Saxena S, Paul A, Glanz BI, Weiner HL, Chitnis T. (2022). Humoral response to COVID-19 vaccination in MS patients on disease modifying therapy: Immune profiles and clinical outcomes.Mult Scler Relat Disord.2022 Nov;67:104079.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9330583/ - Sabatino JJ Jr, Mittl K, Rowles WM, McPolin K, Rajan JV, Laurie MT, Zamecnik CR, Dandekar R, Alvarenga BD, Loudermilk RP, Gerungan C, Spencer CM, Sagan SA, Augusto DG, Alexander JR, DeRisi JL, Hollenbach JA, Wilson MR, Zamvil SS, Bove R. (2022). Multiple sclerosis therapies differentially affect SARS-CoV-2 vaccine-induced antibody and T cell immunity and function. JCI Insight. Feb 22;7(4):e156978.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8876469/