Multiple sclerosis has a common viral culprit, opening doors to new approaches

https://www.sciencenews.org/article/multiple-sclerosis-epstein-barr-virus-vaccines-treatments

by pseudolus • 4 years ago

192 77 4 years ago

citboin• 4 years ago

Moderna is already working on a vaccine. This disease has ruined my life in more ways than one and I hope the vaccine eliminates the disease. Nobody should have to live like this.

gardenfelder• 4 years ago

https://www.nih.gov/news-events/news-releases/nih-launches-c...

rj90006• 4 years ago

I'm on Ocrelizumab for MS, which wipes out memory B Cells. EBV lives in these cells. Ironically I'm sitting here at the cancer center now getting my semiannual infusion. Anecdotally this drug has made my day-to-day much easier.

doctor_eval5• 4 years ago

I know someone on Ocrelizumab and we just had this same conversation.

ungamedplayer• 4 years ago

Medicine is a fucking miracle. Respect for the whole supply chain.

idontwantthis• 4 years ago

Do you get re vaccinated for everything twice a year too or do you just accept the loss of immunity?

badtake• 4 years ago

That’s not how anti-cd20 bcell depleters work. It kills mature bcells but leaves intact your adult mature plasma cells and thus your immunological memory. Your vaccinations and other immunities acquired prior to starting on bcell depleters remain intact, it’s producing future responses to new pathogens that is blunted.

Broken_Hippo3• 4 years ago

I'm not on O, but on another drug for MS (fingolimod), and can almost promise they aren't getting vaccinated twice a year.

First, some of the vaccines are simply dangerous as some are live vaccines. I cannot take some travel vaccines because of this: The risk of me simply catching the disease is too great. Same for their drug.

Second, there is some concern about the effectiveness of the vaccines. For example, the covid vaccine: I wound up with an extra booster because they weren't sure how well I was protected. And this can be the case with other vaccines: You might not get the same sort of protection out of it.

The outcome is generally that it isn't worth it to revaccinate folks. And for myself: It isn't that I'm unprotected completely. My immune system is just... hampered. I think the infusions cause more of an issue, but again, isn't worth the revaccination.

rj90006• 4 years ago

I had to get the shingles vax just before I got on O due to reactivation risk despite being way too young.

I got COVID vaccine and while I had a symptomatic reaction, the results of my antibody tests were concerning. I had my antibodies checked at LabCorp (forget exactly which protein they checked for) and my antibody count was something like 20, while my wife (as the control) had around 12,000.

Some of the most recent research suggests even though the antibody levels are low, there is a good T Cell response still.

You don't lose any immunity you already had, but any potential future immunity is likely blunted.

diogenes_of_ak• 4 years ago

I have to switch of Tysabri soon… how’s O?

rj90006• 4 years ago

I've been living with MS for almost 15 years and still doing very well. However about three years ago everything went wrong and I got on O as soon as I could.

It's been amazing. Wish they had it a long time ago.

Mezzie• 4 years ago

I wish I could be on Ocrelizumab, but it's hard to get it covered because (ironically) I've been lucky and had next to no disease progression in the 6 years since I was diagnosed (8 since triggering relapse). I'd like to keep it that way...

rj90006• 4 years ago

I wish you many more years of good health. Many people with MS have a normal life with little to no disability.

somewhereoutth• 4 years ago

Vaccines might one day “make multiple sclerosis become a historical disease like polio,”

You'd think so yes.

aaronbrethorst• 4 years ago

For those who missed the news... https://www.nytimes.com/2022/08/12/nyregion/polio-nyc-sewage...

jlokier• 4 years ago

Polio's been found in London sewage recently too.

"All children aged 1 to 9 in London to be offered a dose of polio vaccine" https://www.gov.uk/government/news/all-children-aged-1-to-9-...

fithisux2• 4 years ago

Promises, promises and promises again. Like that by now we should be travelling to Mars like travelling to Paris.

nextos• 4 years ago

I think the vaccine will reduce incidence drastically, but it will not make MS a historical disease. MS is not caused by EBV in ~20% of the patients.

It's like T1D, Alzheimer's, etc. There is a major environmental cause, in this case EBV, but also lots of different patient clusters with more complex etiology.

jonahbenton• 4 years ago

One of the most inspiring people I ever met was a college friend's mom who was years into MS but had steeled herself to stay active and strong and so into her 50s ran marathons. In her 60s she was confined to a wheelchair but nevertheless became one of the top hand-cyclist marathoners. Incredible palpable energy and positivity in her presence.

I have no doubt had a vaccine existed she would have taken it and spared herself the suffering.

But absent suitable treatment she made herself a hero.

krisoft2• 4 years ago

I know that Tanina Agosto‘s story is not the main content of the article, but it makes me incredibly angry.

The idea that someone lives in a supposedly developed country , has very worrying neurological symptomps and is not seen by a doctor for months is barbaric. The fact that she literally works in a hospital is an extra layer of insult on top of this.

How are people okay with this system?

colechristensen• 4 years ago

Where isn’t this true unless you’re rich and connected?

doctor_eval5• 4 years ago

Australia? MS clinics around the country are free under Medicare, as is treatment. My friend is receiving twice annual infusions of Ocrelizumab. It literally costs them nothing.

I mean you can argue that Australia is a rich country, but it’s available to any citizen regardless of wealth.

nso• 4 years ago

Most of europe

lostlogin2• 4 years ago

Surely the story has been inaccurately recounted, as picking a pinched nerve, then recommending chiropractic treatment for a patient with a lack of sensation on one side of the body seems unlikely from anyone with any medical knowledge.

vkazanov2• 4 years ago

I didn't read the article. But my friend here in London couldn't get past GP with half of her body losing sensation. It took a LOT of pressure from her husband to get to see somebody relevant.

It turned out to be quite serious but healable given timely help. Most people would just give up until much more problematic symptoms develop.

thewebcount• 4 years ago

Why would you say that? Have you ever had to deal with either a not-well-known or not-often-believed-in disease? There are millions of people in the US who have to deal with this type of shit at every visit, and they are largely women and particularly women of color. There are journal articles describing some of it. It’s not at all uncommon. Having watched this type of thing happen to my wife, I highly doubt the story has been reported inaccurately. I now have to attend all of my wife’s doctor’s visits (even with female doctors) to ensure that doctors don’t dismiss her or her condition. And oddly enough, it happens significantly less frequently when I’m there. (Though it does still happen.)

jibe• 4 years ago

The idea that someone lives in a supposedly developed country , has very worrying neurological symptomps and is not seen by a doctor for months is barbaric.

That's not what happened? She saw a doctor within a day, and was unfortunately misdiagnosed.

The 29-year-old couldn’t control her left side, even her face. “Literally the top of my head to the bottom of my foot on the left side of my body could not feel anything.” The next day, Agosto spoke with a doctor at the New York City hospital where she works as a medical secretary. He told her that she probably had a pinched nerve and to see a chiropractor.

krisoft2• 4 years ago

“Spoke with a doctor” sounds like she had a chat with a coworker on a hallway. If that is not the case and she was properly examined then misdiagnosed then the journalist choose a misleading wording.

spangry• 4 years ago

This is such a fascinating area of research. I think it's increasingly clear that there is a common thread tying together conditions like long-COVID, MS and chronic fatigue syndrome - a long-running and persistent viral infection leading to a chronic immuno-inflammatory response. Other seemingly unlikely diseases such as Alzheimers, depression and even schizophrenia may may have neuro-inflammatory origins too.

This article hints that the persistence of the Epstein-Barr virus might be causing the chronic inflammation. But I wonder if it could instead be due to some sort of non-linear process in the immune-response that causes our immune system to enter a positive feedback loop when it's activated for too long or in a certain way. And perhaps the therapy for this would be to suppress the immune system for some period of time to allow it to abort this feedback loop, perhaps something like this: https://www.healthline.com/health-news/patients-resorting-to...

stevebmark• 4 years ago

Fluoroquinolone antibiotics, like ciprofloxacin, are well documented to cause permanent nerve damage (and chronic fatigue). One of the symptoms/causes is demyelination of the nerves. Similarly in MS, as the article states:

Myelin is the very thing that is destroyed in MS

While it seems unlikely that FQ nerve damage is caused by the immune system attacking its own nerve cells, the mechanism by which these antibiotics cause nerve damage is unknown. This makes them higher risk to take, because your doctor has no idea what to look for to make sure you don't get nerve damage. Most doctors aren't even aware of the link, the FDA forced manufacturers to add permanent neuropathy as a black box warning to the drugs, long after most doctors learned about them in medical school.

If two conditions lead to the same outcome, I wonder if there's any utility in looking for links, either in treatment or prevention, between them.

sterlind2• 4 years ago

Fluoroquinolones are also completely contraindicated in patients with connective issue disorders (e.g. Marfan, EDS, Loeys-Dietz.) It can lead to organ rupture, torn arteries, aneurysms etc. CTDs often remain undiagnosed for a long time, so a small percentage of the population are ticking time bombs for this interaction.

I have EDS, and cipro spooked me so I didn't fill my Rx for it in college. If I had I'd likely be even more disabled than I already am.

drc500free2• 4 years ago

CTDs often remain undiagnosed for a long time

This seems to be a common thread, my wife's EDS diagnosis took more than a decade. It's a straightforward and obvious physical ailment. Even after her diagnosis she ran into problems - she once had to leave an ER without treatment for an unrelated problem, because the attending refused to treat her until she admitted that she was lying about her diagnosis. Hearing her stories and seeing first-hand how her medical interactions go has really shaken my faith in the medical system.

mattgreenrocks• 4 years ago

Thanks for your comment. I have mild hEDS and have always been scared by cipro. Now I know it is likely awful.

If only I could mark myself with “never administer cipro and friends” in some way that would be respected even if unconscious…

pfisherman• 4 years ago

This is how a number of cell / animal models of diseases are done. For example DSS induced colitis in mice.

Pharmacogenomics is a thing. There are companies out there that do PGx testing. The problem is that frontline clinicians mostly haven’t adopted / integrated it into their practices.

throwawaylinux3• 4 years ago

Agosto spoke with a doctor at the New York City hospital where she works as a medical secretary. He told her that she probably had a pinched nerve and to see a chiropractor.

Amazing. Do New York City hospital doctors refer people to witch doctors and prescribe powdered tiger penis too?

pacaro• 4 years ago

This was my take too. It bothers me, perhaps a little irrationally, that chiropractic get a pass that other forms of quackery don't.

https://quackwatch.org/chiropractic/general/

My understanding of the evidence is that there is nothing for which chiropractic is the best available treatment, and for everything except lower back pain there is no evidence that it has any level of efficacy.

mwint• 4 years ago

If nothing else, it’s an incredible placebo.

smeej• 4 years ago

I have Klippel-Feil Syndrome, presenting with a forward- and right-rotated C5/6 block vertebra.

Not only is that rotation only treatable by a chiropractor, but specifically a Pierce chiropractor, trained in posterior to anterior adjustment is needed.

Otherwise the prognosis is, "You're going to be hunched over so severely you can't look anybody in the eyes by your mid-40s, and you won't be able to walk 20 years after that."

Definitely not trying to argue with you. Just suggesting there might be a whole range of niche things you're not aware of but do exist, and for which specific types of chiropractic manipulation of the positions of the vertebrae themselves is the only treatment.

caymanjim• 4 years ago

I don't like the idea of a doctor prescribing such quackery, but I think doctors sometimes tell patients what they want to hear when they don't think there's any real problem and the patient won't accept "suck it up and wait" as an answer.

refurb4• 4 years ago

I think you overestimate the medical profession. Just like every profession there are a few really amazing doctors, a huge number of competent, but otherwise unremarkable doctors and a bunch of doctors who practice substandard treatment.

amatecha• 4 years ago

It's Epstein-Barr virus. In case you don't want to start reading and then be interrupted with a modal popup like I was.

and yeah, more and more studies[0][1][2][3] are indicating the link between EBV and MS:

[0] https://journals.lww.com/epidem/fulltext/2000/03000/epstein_...

[1] https://www.hsph.harvard.edu/news/press-releases/epstein-bar... / https://www.science.org/doi/10.1126/science.abj8222

[2] https://pubmed.ncbi.nlm.nih.gov/31862243/

[3] https://link.springer.com/article/10.1007/s11481-010-9201-3

Gatsky• 4 years ago

Seems clear now that EBV causes enough trouble that we should think about trying to eradicate it if we can get a good vaccine. This will be horrendously expensive and difficult. But eradicating a disease has such unbounded benefits for humanity that we should try. By far the greatest thing medicine did last century, and possibly will ever do, was eradicate small pox.

w10-1• 4 years ago

There are two lines of evidence for EBV and MS, but both are uncertain:

1) Given ~1M vets, ~800 diagnosed with MS after having 2-3 blood samples taken. Of those, most without EBV exposure didn't get MS until they were exposed. MS is rare (<1%), and EBV is ubiquitous (>95%?), so getting large numbers of unexposed people who get MS would be hard in any case. It's unclear if they corrected e.g., for expected age of onset (~30) since I expect they started sampling blood in ~20 y.o.'s.

2) Some researchers claim molecular mimicry, where an EBV protein looks very close to a protein on the foot of myelin (near the edge)

But in MS it's not clear if the inflammation causes the myelin loss or some nerve pathology causes the loss (which causes the inflammation). There's a line of evidence that the axons are disrupted well before the myelin loss.

Also, MS is a clinical disease: it's just "multiple" "sclerosis" in the CNS -- without other more specific causes like MOG/NMO. There could be many causes that end up creating multiple demyelinating plaques, so EBV, even if it is a cause, might not be a principle one.

Finally, the problematic form of MS is the (typically later) progressive phase, with increasing disability even without immune flairs. While some immune suppressants can limit the (earlier) flairs, drugs approved for progressive are barely better than nothing.

Also, the incidence of MS seems to be increasing overall. sigh.

rj90006• 4 years ago

In my opinion living with this disease for a long time I think there's probably a link to lifestyle. I developed symptoms in graduate school during a very stressful time in my life. Years later I had another stressful event and had an awful relapse.

On top of that I've always struggled with my weight.

Makes me wonder if an underlying EBV infection, genetic vulnerabilities, unhealthy lifestyle and a stressful event that permits the EBV infection to compromise the CNS ultimately causes the condition we call MS.

donnnamorris07• 4 years ago

I was diagnosed with PPMS in January 2018 and my neurologist put me on OCREVUS. At the time of diagnosis to MS I just had a little numbness in left hand and a little weakness in right leg but now after two years and three times OCREVUS Infusion which was supposed to help me and slow down the disease progression but on the contrary I am using walker for little walking at home with lack of balance and too much spasticity, weakness, numbness, bladder issue, low back and neck pains!!! I think this drug destroyed my life and I think if I hadn't used this drug my MS disease wouldn’t progressed at this level but I had no other choice because my neurologist said this is the only medication for PPMS!!! There has been little if any progress in finding a reliable treatment. Acupuncture eased my anxiety a bit. I was introduced to Health Herbs Clinic and their effective Multiple Sclerosis treatment. When I started the MS treatment I felt like a miracle has happened. Feel as good as I can feel. Started driving including on a freeway.! The herbal treatment is a sensation.. “Just google openpaymentsdata and see how much your doctor is getting paid ! AWESOME!!! They make money while we suffer.” I Just wanted to share for people suffering from this disease to visit healthherbsclinic. com it’s a 10 out of 10 from me! I Adhere anyone reading this to try natural approach, I’m 55 and never been this healthier.

Multiple sclerosis has a common viral culprit, opening doors to new approaches

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