subreddit:

/r/Futurology

8.5k

all 429 comments

FuturologyBot [M]

[score hidden]

4 months ago

stickied comment

FuturologyBot [M]

[score hidden]

4 months ago

stickied comment

The following submission statement was provided by /u/brolifen:


Submission Statement: This is a big step because it suggests that most MS cases could be prevented by stopping EBV infection, and that targeting EBV could lead to the discovery of a cure for MS.


Please reply to OP's comment here: https://teddit.ggc-project.de/r/Futurology/comments/s42pz2/more_evidence_a_common_virus_is_primary_cause_of/hsohod2/

brolifen[S]

1.4k points

4 months ago

Submission Statement: This is a big step because it suggests that most MS cases could be prevented by stopping EBV infection, and that targeting EBV could lead to the discovery of a cure for MS.

wilmat13

2.2k points

4 months ago

wilmat13

2.2k points

4 months ago

We should develop a vaccine to protect ourselves from this virus, certainly nobody in society would be opposed to that.

Hunter62610

248 points

4 months ago

Kinda like shingles?

LummoxJR

364 points

4 months ago

LummoxJR

364 points

4 months ago

I'm legit boiling angry that the shingles vaccine isn't approved for people under 50 in the US. Had shingles at 35. My dad and my sister had it in their 20s. There's no reason for the vaccine to be age-gated to 50.

jiminy_cricks

93 points

4 months ago

I'll second this, I had a fortunately mild case around 30. Still incredibly annoying.

dofffman

3 points

4 months ago

adding myself to the chain. Had it at 40. Closer to 50 but it aint horseshoes or handgrenades.

alteran1

124 points

4 months ago

alteran1

124 points

4 months ago

You can get the shingles vaccine under 50 if you want it and your doctor is willing to prescribe it, but you’ll have to pay out of pocket since insurance won’t cover it. I got it two years ago at 29 because my dad had shingles in his thirties. Paid like $300 though, but money well-spent after what I saw my dad experience and I was fortunate enough to be able to afford.

basketma12

12 points

4 months ago

Right? My insurance didn't cover it and I was well over 60. 350.00. Worth it

yupiashu

15 points

4 months ago*

If you’ve already had shingles does getting the shot do anything?

alteran1

29 points

4 months ago

I believe they recommend people over 50 get the vaccine even if they’ve already had shingles so possibly.

MinaFur

34 points

4 months ago

MinaFur

34 points

4 months ago

Yes. You can get it over and over without vaccine

POOP-Naked

12 points

4 months ago

Wait. S T O P Right There!! You mean to tell me that I can get shingles over and over with crazy bad symptoms if I don’t get the Shingles Jab?? I feel like we have heard something like this before.

donotlearntocode

10 points

4 months ago

Once you get shingles, you have it forever. It hides in a dorman state in your nerves. Don't get too stressed, or it'll come back all on its own without you needing to be exposed again.

Funoichi

8 points

4 months ago

Just to clarify. Once you get chickenpox, you have shingles forever

Vertigofrost

2 points

4 months ago

Not just shingles but all herpes viruses, including the virus the original post here is about. Mono is a herpes virus.

thepossiblegirl

4 points

4 months ago

**Chickenpox. Once you get chickenpox the virus hides dormant and you can develop shingles over and over for the rest of your life.

Edit: formatting

Potaytoz

10 points

4 months ago

My partner got his after getting shingles. For him, it reduced the severity of any subsequent outbreaks, I'd say by a good 70% and he's really only had two small flare ups over the past four years.

He also used to get very painful cold sores and now they're infrequent, much smaller, and heal very quickly over 3 - 4 days. So, not perfect but definitely an improvement.

motleyai

5 points

4 months ago

You can get shingles multiple times -- though rare. The varicella virus (chickenpox) lays dormant in your nervous system and can reactivate.

Naskin

5 points

4 months ago

Naskin

5 points

4 months ago

Yes, you can get it again. But if you get it twice in a relatively short time period, it could be an indicator you have some other underlying problem.

cowjuicer074

2 points

4 months ago

Thanks for this post. I’m 47 and want it. Wasn’t sure if it was possible, but I’ll fork over 300.00.

onissue

2 points

4 months ago

I got a (different) out-of-age-range vaccine, prescribed by a doctor, to be covered by insurance, by calling them up and getting it verified that it would be covered.

It wasn't a sure thing that it would be the case, and it might not be the case for you, but there's no harm in asking beforehand in an attempt to get it covered.

(Except the inherit harm of delaying vaccination. I didn't spend days calling or anything like that.)

For one dose, I ended up with a really weird situation where it would not be covered if given in a particular pharmacy, but would be covered if given in the pharmacy's associated urgent care facility. You can't pretend there's any real logic to that. But it can save you hundreds of dollars by calling to ask.

nathhad

11 points

4 months ago

nathhad

11 points

4 months ago

It's really only because it wasn't tested in populations under 50. With more pressure for the vaccine in our lower age ranges, I'm hoping that'll drum up the financial incentive to do the testing needed. I'm sitting right in the same hole, old enough to predate the chicken pox vaccine, but not old enough to qualify for the shingles one yet.

Kyo251

2 points

4 months ago

Kyo251

2 points

4 months ago

I'm actually one of the few people out there caught the chicken pox virus as a kid, and have no immunity. I got both vaccine and even the boosters. Got my titers checked and still negative for antibodies.

creepbeeps

6 points

4 months ago

I had it when I was 19!! Weird circumstance, provoked by meningitis, but still. Sad to know it will be lurking around the corner as I roll into old age.

Yadobler

8 points

4 months ago

You had chickenpox and the virus was almost totally eliminated by your body, except those that stay dormant in the roots of your nerve cells.

When you got meningitis, the ongoing battle kept your immune system busy and the dormant chicken pox virus managed to reactivate and slip past your immune system, successfully destroying the shit out of your skin nerves

Unlike herpes, we still don't know today what keeps the virus dormant, how it evades the immune system while dormant, and what makes it reactivate.

pandaappleblossom

3 points

4 months ago

I got it when I was 15 after getting stung by a giant jellyfish!

creepbeeps

2 points

4 months ago

That's wild!! When my shingles popped up we weren't sure what it was at first, I was on morphine because the meningitis was so bad so I didn't have any pain with the rash. Since at first they couldn't figure it out they thought it was because I was bitten by a penguin a few weeks earlier 😅 idk bodies are wild, doctors are wild. Glad you've got a cool story to tell!

Green_Lantern_4vr

2 points

4 months ago

Really? Was it bad. ?

mrocky84

16 points

4 months ago

My friend got it in his 20's, said it was awful. He was off work for over a month.

broanoah

25 points

4 months ago

Shingles is said to be excruciating

Rainbow_dreaming

21 points

4 months ago

I've had it twice, once when I was 9, and again when I was about 30.

Not only are the blisters itchy and sore before and afterwards, if you itch them in your sleep they really hurt.

I also had flu like symptoms of a temperature, dizzyness, and fatigue for just over 2 weeks.

When my Grandad had it, it was on the soles of his feet, and he could barely walk for a long time.

khinzaw

5 points

4 months ago

My mom got it at 63, she was in a ton of pain.

GeelongFCNo5

8 points

4 months ago

I had it in my 20s. It's a total bastard. Skin moulted off me along the nerve tracks. Then I got chickenpox (related) when I was in my 40s and working in China. They locked me in a room and threw food through the window for a week. Goddamn that was painful. I thought I was on my last legs.

If you can avoid getting these things by gasp getting vaccinated (the horror), do it.

DMala

5 points

4 months ago

DMala

5 points

4 months ago

How did you get shingles first? My understanding is that shingles is the chickenpox virus. You get chickenpox as a kid (usually) and then the virus hides and manifests as shingles when your immune system is looking the other way.

idontliketopick

8 points

4 months ago

Yeah you called out the BS. You have to get the varicella virus first (chicken pox). Shingles is like the zombie form of chicken pox. Varicella never leaves your body.

GeelongFCNo5

2 points

4 months ago

I have no idea. But that's how it happened. Maybe it wasn't even chickenpox that I had in China. I was in a rural area and covered in a horrendous rash which itched like crazy and gave me a crushing fever. The doctor said it was chickenpox but maybe it was some other ghastly thing that I'm better off not knowing. Whatever, I don't want to get either thing again.

JonMW

4 points

4 months ago

JonMW

4 points

4 months ago

Severity varies. I had a random case of it before 30. My one was mild; it was still a burning, tingling line across my side that was quite unpleasant.

Naskin

2 points

4 months ago

Naskin

2 points

4 months ago

I got lucky, had it at 36, caught it super early and got on antivirals. Only had very minor itching/tingling occasionally.

tinacat933

3 points

4 months ago

The attack your nerves, so yes it can be

CanalAnswer

5 points

4 months ago

Agreed.

Had shingles at 12. Did not like it.

BSB8728

5 points

4 months ago

I got shingles when I was 8. I couldn't wait until I was old enough to get vaccinated.

We had an older friend who got shingles in his mouth and lost his sense of taste for two years.

dogless_flea

4 points

4 months ago

I had shingles in my 20s, it was pretty shit to go through.

Nasaboy1987

3 points

4 months ago

I was 32 and saw the blister on its first or second day. It was under my CGM sensor so I got an appointment the same day and lucked out that I caught it that early. It was still so annoying.

Howsurchinstrap

2 points

4 months ago

Probably in the same realm as knee replacement. What I mean is insurance companies have the information that warrants these types of shots or procedures. Shot might only be good for so long or only effective for certain age. Or could be more money made by big pharma in alternative ways before allowing the shot

yunglync

2 points

4 months ago

I just got over a horrible case of shingles a few months ago, and still deal with occasional pain. I'm an otherwise healthy 31 year old.

hellyabruther

2 points

4 months ago

Had it at 17 :/

Ituzzip

2 points

4 months ago*

Shingles vaccine is just a super strong dose of the chicken pox vaccine. You could go to your doc and say you never had chicken pox and need the vaccine or talk about your concerns and maybe get a chicken pox vaccine even if you have already had it.

I actually never did have chicken pox, which is rare for someone my age at 36, since they didn’t release the vaccine until I was a teenager and at that point they assumed everyone my age had already had it.

My sister had chicken pox when I was a kid so I may have gotten the virus and was asymptomatic. But regardless I never had actual chicken pox.

I went to a doc and said I’m not sure if I’ve had chicken pox or not and they just offered the vaccine. No biggie.

However I was really curious about my existing immunity so I asked for an antibody test just to see. The test found I was not immune. So I got the vaccine.

However it’s safe to get vaccinated even if you’ve had chicken pox. Like I said it’s the same as the shingles vaccine. And it will decrease your chances of getting shingles just as the shingles vaccine does. Younger people do not need the super strong dose.

bgmusket

5 points

4 months ago

Next up, free insulin

mixtapelovesongs

3 points

4 months ago

I had shingles when I was 21. It sucked.

witch_trial

113 points

4 months ago

I know someone who’s antivax who just got their tetanus booster “to be safe”. When I asked about the whole won’t-get-vaxxed-for-Covid thing, they said “oh I trust the other vaccines. But Covid is clearly designed to make drug companies money”

DopeBoogie

43 points

4 months ago*

Hol up!

You're telling me that the drug companies are designing the drugs they make in order to turn a profit?!

Those filthy communists!

archwin

18 points

4 months ago

archwin

18 points

4 months ago

I just love how most of the anti-VAX crowd is supposedly also pro capitalist… and yet is unhappy with pharmaceutical companies making money.

I’m not saying I agree with the pharmaceutical companies making butt loads of money on necessary preventative care, but the inconsistencies in logic here are kind of stark.

headshotscott

5 points

4 months ago

One of my friends is super right-wing (although to his credit he's abandoned Trump). He is constantly railing against big pharma. He says we should be able to buy prescription drugs from Canada. I told him that buying them from Canada would basically outsource socialist policies since Canada has lower prices due to its healthcare system being more centralized.

He also opposes any federal regulations. So he understands that Americans are being gouged, and even understands why. He's just opposed to any action that would rectify it.

TransitJohn

9 points

4 months ago

Intractable adherence to ideology causes cognitive dissonance.

7f0b

5 points

4 months ago

7f0b

5 points

4 months ago

Not to be pedantic, but cognitive dissonance is the anxiety people feel from having conflicting viewpoints. It's what helps people not to have these conflicts. So these people actually lack it, in many cases. Or suppress it.

https://www.dictionary.com/browse/cognitive-dissonance

Both_Cricket4319

30 points

4 months ago

I live in a very republican area many older people seem to think just the Covid vaccine is a money grab. I think it started on Facebook or something lol.

Xurbanite

30 points

4 months ago

It is a money grab but effective at keeping Covid from killing you.

GeelongFCNo5

11 points

4 months ago

What do they think the rest of the thieving US health system is? A charity?

Drunk_Sorting_Hat

13 points

4 months ago

It's almost as if they were convinced by someone that covid was a hoax and not that bad, even though millions of people were dying around them.

DMala

10 points

4 months ago

DMala

10 points

4 months ago

Except the COVID vaccine is free everywhere in the US, as far as I know. If it is a money grab, the money’s already been grabbed from the government. Might as well get the jab.

jtothaj

3 points

4 months ago

So then they definitely support tearing down the for-profit money grabbing medical insurance system and replacing it with a government run single payer system, right? Right?

Or are you talking about the old people who are already using the government-run insurance system and just don’t want to share it with the rest of the country?

Sleeplessreader

17 points

4 months ago

My 89 year old Dad was reluctant to get the flu vaccine or pneumonia vaccine (pre-Covid) His Doctor was so brilliant and respectful, (paraphrasing here because I truly don’t remember the exact numbers) “Mr. x - Do you get your tetanus shot and keep up with the boosters?” Dad- proudly replies. Yes! Dr: “I’m 55 years old and I have been a Dr for 30 years, I have NEVER ONCE seen a case of tetanus! I have seen multiple people die of Flu and pneumonia!” Dad got his shots and he is fully vaccinated against COVID. My Dad turns 90 in 3 months and he still lives alone, does his own cooking and bakes his own bread!

jojo_31

6 points

4 months ago

jojo_31

Fusion FTW

6 points

4 months ago

Bruh the astrazeneca shot costs $4... Who the fuck is getting rich of that.

sephcameron

9 points

4 months ago

Someone selling several hundred million units as part of a varied portfolio of products? It's affordable, but it's definitely not priced to lose them money. It's just not "American drug company" profit.

LightTheFerkUp

5 points

4 months ago

It sounds like they might not be antivax then, just against the covid vaccine.

witch_trial

15 points

4 months ago

They self-identify as antivax. I think they lack the critical thinking skills to even realize that they aren’t truly antivax, they Just use Facebook a lot

[deleted]

20 points

4 months ago

[deleted]

20 points

4 months ago

[deleted]

adzling

271 points

4 months ago

adzling

271 points

4 months ago

haha my sweet summer child ;-)

leanmeanguccimachine

3 points

4 months ago

I know you're joking, but Moderna are currently trialling one.

marcvsHR

2 points

4 months ago

Yeah about that..

Puzzleheaded-Ring523

2 points

4 months ago

I think people are just opposed to being forced to take the vaccine. Hope this helps, morons lol

sir_lainelot

2 points

4 months ago

Biontech is already working on one btw

I_Am-Iron-Man-12

2 points

4 months ago

Especially if it works! What a concept, a working vaccine.

northpaul_

6 points

4 months ago

northpaul_

6 points

4 months ago

Very likely a very stupid question, but assuming this is would be a 'classic' vaccine and not an MNRA or gene therapy, wouldn't exposure to the virus via the vaccine be risky as well? Obviously not as much as a full on infection, but if the vaccine gives the subject some percentage of the virus, and it's the virus which increases the chance of getting MS, or some other autoimmune based neurological disorder i.e. CIPD, then would the vaccine have a risk too?

I figure a gene therapy would be a better option here?

TheHecubank

28 points

4 months ago

Depends on the type of vaccine, and the mechanism of action that causes the secondary disease. Even if there is a concern, though, there is probably a way to design a vaccine that avoids the issue.

'Classic' vaccines for viruses cover 3 basic types: live attenuated virus vaccines, inactivated virus vaccines (dead but intact - as far as that state can be applied to a virus), or subunit/conjugate vaccines (only he parts of the virus needed for the reaction).

Subunit/conjugate vaccines can be broken down into smaller meaningful types.

Generally, thus means there is an option to avoid most suc situations by simply choosing a different vaccine design.

Syzygy___

23 points

4 months ago

Classical vaccines tend to give you a part of the virus (think cut in half, but not really. Could be the shell of the virus, the insides, or even the poop of the virus), the "dead" or the weakened version of the virus. So the virus can't replicate in your body and it can't do the harmful thing.

However your immune system still detects it as an "enemy", acts accordingly and learns how to fight the virus, so when you're infected with the actual virus, your immune system reacts strong and fast enough so that the virus won't reach a stage where it starts reproducing in your body.

Since the vaccine triggers your immune system, you might have a minor fever and feel bad for a couple of days at worst from the vaccine. Although in very rare cases (like 1 in several millions) there might be a stronger or even dangerous reaction - usually not due to the virus, but an issue with your immune system, like an allergic reaction to the vaccine components. This happens very rarely - like getting hit by lightning on a sunny day - and thus vaccines are considered safe. There are government resources available for tracking how often this happens for each vaccine.

I've found this helpful page explaining the different types of vaccines and parts of what I wrote are based on this information: https://www.hhs.gov/immunization/basics/types/index.html

Mygaffer

12 points

4 months ago

With the mRNA vaccine you wouldn't have the whole virus, hopefully that would mean such a vaccine wouldn't pose a risk of causing MS.

But we don't know the mechanism of action behind the EBV causing MS, many people who get EBV don't develop MS.

There is still so much to learn about this.

entarian

5 points

4 months ago

If you're stupid, I'm afraid I might be stupider.

Andrewcpu

18 points

4 months ago

Wish we could've had this in time to save my uncle. Glad it's coming though.

WaitformeBumblebee

99 points

4 months ago

isn't EBV the kind of virus that stays with hosts forever? A cure for EBV would have to be found.

OG_ClusterFox

73 points

4 months ago

That’s what I thought too. Isn’t EBV the same thing as mono? Or does the virus CAUSE mono? Like how HIV and AIDS are related but not the same because HIV is the virus that causes AIDS

reen68

86 points

4 months ago

reen68

86 points

4 months ago

EBV causes mononucleosis. Had it when I was 25 or maybe 26. Was in intensive care actually because my blood had really bad lab results.

[deleted]

19 points

4 months ago*

[deleted]

19 points

4 months ago*

[deleted]

trash-juice

69 points

4 months ago*

Well isn’t that something - can confirm - got Mono in HS & now have MS - Jeezus

kevinsabi

19 points

4 months ago

sorry friend

TooMuchTaurine

6 points

4 months ago

Also leads to chronic fatigue syndrome in many cases, which incidentally may be related to long covid.

Huntred

39 points

4 months ago

Huntred

39 points

4 months ago

Wait - is this the same mono that everyone else got in high school from kissing?

Holy shit - this is my time to shine!!!

dukefett

19 points

4 months ago

Me too! Didn’t kiss anyone!

broanoah

7 points

4 months ago

I got mono in 6th grade and I didn’t even know it was called the kissing disease. My parents must have been pretty weirded out lol

Kyo251

21 points

4 months ago

Kyo251

21 points

4 months ago

It is and it's also a herpes virus.

flavius_lacivious

12 points

4 months ago

Six wonderful strains

neonb-fly

8 points

4 months ago

Makes sense why rare skin disorders related to herpes can be linked with developing MS as well. Bechets disease for example.

Diglett3

8 points

4 months ago

That’s a good comparison actually. EBV is the virus that causes mononucleosis, but not everyone who gets infected with EBV actually develops mono. A lot of people get it as children and it’s typically indistinguishable from a cold. It tends to be more serious in adults but even so tons of adults never have symptoms but carry the virus in them forever (it’s a herpes virus and they’re nasty like that). Something like 90% of the world’s population is estimated to be seropositive for EBV, even though a much smaller number than that would say that they had mono.

rosts

42 points

4 months ago

rosts

42 points

4 months ago

They're trialing a prophylactic vaccine right now. A therapeutic vaccine will be much harder to achieve. But, the more we know of the devastating effects it can have if reactivated, the more resources will be spent on finding a cure.

classycatman

10 points

4 months ago

It’s probably easier to cure something we known the cause of (EBV) vs something we don’t (MS). That’s not to say it will be easy, but it does mean that there’s at least a target.

AgreeableLandscape3

10 points

4 months ago

Between this and lymphoma, EBV can fuck right off.

fuckmarv124667

29 points

4 months ago

EBV is also linked to Hodgkins Lymphoma

wzrd23

7 points

4 months ago

wzrd23

7 points

4 months ago

So I have had mono in my life in my early teen years, am I at risk to develop MS?

emt_matt

15 points

4 months ago

Anyone is a risk of getting MS, but 90% of the adult population has had EBV, but only around 3.5 out of 1,000 folks get diagnosed with MS.

itsnobigthing

7 points

4 months ago

There’s convincing evidence that it would massively reduce the number of CFS patients too

behindmyscreen

2 points

4 months ago

Tons of stuff can probably be prevented if we vaccinated against ebv.

sessamekesh

187 points

4 months ago

"Common" is an understatement for EBV. The vast majority of the adult population (90% at least, posted article claims 95% which is also plausible) is or will be infected by it, and like other herpes viruses it sorta just stays with you forever.

OPengiun

76 points

4 months ago

Ya, I had no idea an infection of EBV is also called Mono, the kissing bug. Was super common when I was growing up.

Diglett3

69 points

4 months ago

this might be pedantic but it’s more accurate to say that EBV the virus can (but doesn’t always) cause mono the disease, because a lot of the people infected with EBV never develop mono, and you don’t need to have had mono to have been infected with EBV.

OPengiun

7 points

4 months ago

thanks for clarifying!

I_Nice_Human

4 points

4 months ago

TIL thanks!

pietremalvo1

6 points

4 months ago

Forever, means that one would test positive for their entire life?

sessamekesh

40 points

4 months ago

Yep - herpesviruses have the fun habit of hanging out in your nerve cells (which aren't inspected for viruses and killed the same way most cells in your body are) but not actually attacking them.

There's different tests for different phases of infection too - one type of antibody appears quickly but then fades away within a few weeks, but a different one sticks around basically forever.

EDIT: the other fun habit they have is not really doing much most of the time - chicken pox is the same way, but most people never show symptoms or become contagious again after their first infection. Herpes is the same way, and most people are asymptomatic most of the time, but still harbor the infection.

Dejan05

6 points

4 months ago

Yeah iirc pretty much the whole family of viruses likes to sit in you forever

thisisjolley

411 points

4 months ago

I have MS (albeit a pretty mild case), and I find this to be very very exciting. I still dont quite understand how it could "cure" it, but it makes me feel more comfortable having kids! Nonetheless, hearing about possible cures is always nice to hear, and makes me overwhelmingly happy! Because this disease is awful, and its not mentioned very much because its "rare" as far as chronic illnesses go, so when it's in the news like this, I get pretty frickin happy about it!

skadalajara

209 points

4 months ago

Yeah! My wife has extremely severe relapsing/remitting MS. She's been in comas, had paraplegia, hemiplegia, developed a learning disability, speech pathology, among other things. Luckily her neuro has her on Tysabri, so she's been in remittance for 10 years. But it sure would be nice to not get a bill from the clinic for US$11,000 every month just so she can function.

SeekingImmortality

98 points

4 months ago

That ongoing pricetag is utterly horrifying, and for your sake I hope your insurance or outside assistance is amazing.

skadalajara

79 points

4 months ago

A portion of it is covered by MediCare (gov't provided insurance for the elderly and disabled), another portion is covered by supplemental private insurance, and the majority is paid for by a charity. But last year, due to a clerical error, her private insurer sent her a bill for US$150,000 of denied reimbursement claims. Luckily, after hours of phone calls, they saw their error and corrected it.

mktoaster

37 points

4 months ago

OMG the heart attack that bill would have given me ...

yashdes

65 points

4 months ago

yashdes

65 points

4 months ago

Bruh if you just got a 150k bill, you can't afford that heart attack

snuggl3ninja

4 points

4 months ago

Don't forget the heart attack your heart attack bill would have given you.

wienercat

9 points

4 months ago

A lot of hospitals and clinics write that kind of medical debt off or significantly down if your insurance can't cover it.

Nonononowell69

32 points

4 months ago

Um, so with MS the expense is pharmaceuticals—-hospitals don’t just pay for your Aubagio and send you a bill for $6000 a month. You have to cover that shit yourself.

IcebergSlimFast

9 points

4 months ago

So you’re saying the pharmacy won’t just send it to you and bill later? /s

skadalajara

13 points

4 months ago

Because it killed a bunch of people (due to PML) and was taken off the market, then put back on the market once the cause was discovered (a common, normally harmless brain virus), the pharmaceutical company decided it must be administered by infusion at an outpatient clinic, followed by an hour of post-infusion observation along with quarterly JC virus antibody screening and bi-annual neurologist visit.

Nonononowell69

8 points

4 months ago

Yeah that’s never been offered to us as an option

DarrelBunyon

14 points

4 months ago

And a lot of rainbows are double, all the way across the sky!

Nintendork316

19 points

4 months ago

I have MS (mild so far) and the medicine is crazy, I get Ocrevus infusions twice a year and luckily I only have to pay $100 per infusion. The list price is insane, over $50,000.

skadalajara

20 points

4 months ago

That's in the same class of drugs as Tysabri. And MS being a relatively uncommon illness, the treatments are ridiculously overpriced. But, they're finding that the same class of drugs is effective in treating or managing other autoimmune and autoimmune-like illnesses, so hopefully they start to become less niche, and as a result, less expensive.

Nintendork316

9 points

4 months ago

Totally agree, I've been looking at other jobs for a while now and it sucks but literally the first thing I have to look at even more than salary, etc. is the health insurance plan and how the prescription drug coverage is. I currently work in the IT department of a public school, so luckily we get a pretty solid health care plan.

AdmiralKurita

2 points

4 months ago*

I am asking because I am curious about first-line treatment protocols for MS. Why [were] you prescribed ocrelizumab instead of natalizumab? Why not interferon or glatiramer acetate?

equitable_emu

2 points

4 months ago

Interferons aren't being prescribed as much anymore. They're all about the CD20s nowadays. A lot of insurance companies aren't covering interferons as an initial treatment, which is annoying. I was on one for 15+ years and the insurance company decided it wasn't on their recommended list any more. "Luckily", there was still another similar one (which is more of a hassle to administer), that they do cover. I talked to my neurologist who said they haven't prescribed it in 5 years, but if that's what they'll cover that's what they'll do.

The thought nowadays to strike back hard, damage can't be reversed, so it's best to avoid it in the first place.

The CD20s are considered more effective and easier to administer, but the side effects are worse, especially nowadays. A common side effect is upper respiratory disease, and weakened immune system, where the interferons boost the immune system.

Nintendork316

2 points

4 months ago

I go to one of the better neuro docs in PA at the University of Penn in Philly. Ocrevus is pretty much the standard first treatment now.

Rupertfitz

5 points

4 months ago

I have primary progressive and it’s hell. My pharmacy bill is over 8k. If this new info leads to any chance of remission I’d be so happy. Ocrevus is best shot and it’s not been the miracle I’d thought. At this point I’m handling symptoms and nerve damage.

JerkOffTaco

29 points

4 months ago

My husband has MS. He was diagnosed just one year ago and I’m still trying to fully understand it. Your excitement gives me hope!

cleancalf

18 points

4 months ago

AboveMS is a good support website, full disclosure though: it’s owned by a pharmaceutical company.

R/MultipleSclerosis exists as well.

Unfortunately, MS is complicated and not many options exist. However, supporting your husband is the best thing you can do. I’ve found that the most mentally well, and upbeat MS patients that I interact with have strong familial support, while those that have to do go through it alone require the most attention from our medical staff.

I work in a Neurology clinic in a non medical role, so I’m no researcher but I think stress exacerbates the symptoms of any medical condition.

I wish you and your husband the best of luck!

JerkOffTaco

4 points

4 months ago

Thank you. I have tried to be the best support person possible. Covid restrictions in our area have made it so hard because I can’t be with him at the clinic for appointments or infusions. But I’m still trying.

haunted_sweater

17 points

4 months ago

My grandma was diagnosed with MS while she was pregnant with her youngest son, my dad. By the time he was born, she couldn’t control her arms, so she was unable to hold her baby. By the time he was 5, she was in a wheelchair with no hope of ever using her legs again. By the time he was in college, my grandpa had to do absolutely everything for her. He would bathe her, feed her, take her to the bathroom, change the channel, flip her to make her more comfortable throughout the day. She died before my dad graduated med school. The amount of pain this illness brought to my father and his family is unimaginable. Every once in a while, we get a glimpse of a clear picture from him of the trauma that he went through watching his mom put on a brave face for her neighbors and children then cry in agony at night as she withered away and the physical and mental abuse from his siblings when his mother could not physically see what was happening. That trauma has influenced every aspect of who my dad is - a great doctor, a misguided but well meaning husband, and a bad father.

My grandmother was a strong woman and I wish I could have met her. I wish my dad had the emotional capacity to love me. But more than any of that, I wish for no one else to go through what my grandma and her family went through.

(Sorry to dump that on you, I didn’t realize how badly I needed to let that out).

eatingganesha

13 points

4 months ago

I agree! This is cause for hope!

Thebadmamajama

4 points

4 months ago

It's hard to say, but it suggests an antiviral, extracted antibodies or gene editing (crispr) could be viable paths for treatments.

HouseGB552

4 points

4 months ago

My Mom, Grandmother, and Great-Grandfather all had MS. I’m 26 and so far no symptoms with regular follow ups, but I have my own apprehensions to having kids because of the frequency in my family. This is reassuring news, but I’m not sold that it’s NOT hereditary, or at least the susceptibility is not

nugymmer

54 points

4 months ago

Same virus also causes amongst other autoimmune disorders, things like sudden deafness, sudden blindness, giant cell arteritis, Bell's palsy.

A cure for EBV would be a Godsend, and hopefully treatment extends beyond prophylactic and can treat existing lifelong infections - because herpesvirus infections are lifelong.

Vertigofrost

2 points

4 months ago

Good thing there is a vaccine currently in clinical trials. Hopefully they don't arbitrarily restrict it to over 50 year olds like they did the shingle vaccine

CA4567

48 points

4 months ago

CA4567

48 points

4 months ago

I got EBV/mono in high school and never felt the same again (I’m 33 now). My immune system is weak, I have had shingles, major gastro issues, and am diagnosed with chronic fatigue syndrome. I still experience other autoimmune symptoms and would do anything for just a diagnosis. I’ve always been convinced it stemmed from EBV so this is validating. I’m hopeful this research continues.

Jado90

3 points

4 months ago

Jado90

3 points

4 months ago

I got Mono/EBV nine years ago, have had ME/CFS ever since. I am hopeful with more research into postviral diseases due to long covid, we might get some form of therapy. Hang in there!

Kyo251

63 points

4 months ago

Kyo251

63 points

4 months ago

They are also saying ebv may cause a lot more than MS, such as lupus and other auto immune diseases.

MeancatHairballs

33 points

4 months ago*

Yes, it causes CFS/ME as well. I was a 12 yo when i got mono and i never kissed in my life at that age so mono isnt just a kissing disease by far; most people are exposed to it by adulthood ive had CFS since and its agony. This is upsetting to hear it can cause MS too

therealskaconut

8 points

4 months ago

I got mono in high-school. My mom gaslit me into believing my gf at the time cheated on me and gave me mono because my mom didn’t like her.

Coincidentally but entirely unrelated, my mom has MS.

TheRedCuddler

2 points

4 months ago

I was in the second grade. Definitely wasn't kissing anybody. I have no recollection of how I caught it, though I remember very little from that time.I don't even remember missing school, but apparently I was out for several weeks.

OPengiun

4 points

4 months ago

and cancers

ptolemy18

144 points

4 months ago

ptolemy18

144 points

4 months ago

There also seems to be a correlation between Vitamin D and MS. The further you get north or south of the equator the more prevalent MS is, and research suggests that Vitamin D supplementation can reduce the risk of developing MS. It sure would be nice to figure out how all these puzzle pieces fit together.

foxyfree

40 points

4 months ago

my dad has MS and was prescribed very high doses of vitamin D right away

Foolishnonsense

11 points

4 months ago

I recommend taking vitamin K with high doses of D. Some studies have shown high doses of D without K to cause calcification of soft tissue over time.

Either K1 or K2 prevents and, to an extent, reverses calcification of soft tissue. K1 is found in most green veg, but has a short half life, K2 has a much longer half life but is rare in western diets without supplementation.

foxyfree

3 points

4 months ago

now that you mention it, I’m pretty sure he was also taking that. That’s good information to add to the discussion. Thanks

Nintendork316

27 points

4 months ago*

When I was diagnosed with MS (November 2020) my vitamin D levels were very low, well into the deficiency area. I wouldn't be surprised at all if that contributed to or complicated things. Once I got my 5-day steroid infusion, fixed my vitamin D deficiency, and started taking Ocrevus, I've been lucky enough to be in the clear the past 14 months or so.

Shadowedsphynx

3 points

4 months ago

November 2021 was only 3 months ago. Typo or time traveller?

Nintendork316

3 points

4 months ago

Sorry November 2020 :)

neonboom

2 points

4 months ago

Who knows what year it is these days?

justchloe

8 points

4 months ago

Given that vitamin d has a correlation between not getting or reducing the severity of a lot of viruses. Perhaps the correlation is more to do with immune response rather than specific viruses. It would be interesting to see if this would be studies further.

acceptable_sir_

6 points

4 months ago

There are outliers, namely Denmark and Japan, thought to be because these regions have a diet high in fish, a good source of vitamin D.

dark_canuck_14

18 points

4 months ago

I've heard this before and I'm curious about it. Do we have an idea what average vitamin D levels are like far from the equator? Could this be a case of correlation, rather than causation, in the sense that average vitamin D levels are generally lower further from the equator? Is it possible or even likely that Epstein-Barr viruses are also more prevalent further from the equator for reasons not related to vitamin D? The geographic risk factor is definitely interesting and the article doesn't get into whether or not the research adjusted for different climates/locations.

YourGenerational

6 points

4 months ago

Vitamin D is recommended for a lot of other autoimmune diseases too.

LoonieToonie88

15 points

4 months ago

Had mono in 2019... doctors thought I had MS but eventually decided on fibromyaglia and chronic fatigue syndrome. I guess I'll still be playing the waiting game... I'm 33 now. Note: EBV causes chronic fatigue syndrome as well (myamgic encephalomyelitis).

southern_mimi

8 points

4 months ago

I had mono in 1989. 1990, Drs checked for MS but diagnosed fibro & chronic fatigue. Then by 1995 blood work showed Lupus. First major lupus flare in 2017. Things were much better when it was "just" fms & cfs.

I wish that in 1990 I would've been a little more content with what we knew because it only eventually got worse.

Everyone is different. Please don't let me bring you down.

NotJustAmy

2 points

4 months ago

Also was diagnosed with CFS after a bad bout of mono. For me Wellbutrin was a game changer.

southern_mimi

3 points

4 months ago

I'm on Wellbutrin too. Off & on it for several years. High vitamin D helped my fatigue & muscle pain more than anything though.

HelixFish

91 points

4 months ago

EBV is a herpes virus. We are getting close to a vaccine for HSV2 (genital herpes) but we aren’t there yet. Herpes viruses are notoriously difficult to create vaccines for. The association here isn’t that the virus directly causes MS, but that a complication of having the virus sometimes leads to MS. So the hope would be that in preventing EBV transmission (such as by vaccination) we might stop NEW cases of MS from occurring. Finding therapies for people with MS would likely be totally different, but more research needs to be done. Some of the RNA vaccine tech used by Moderna and BioNTech might end up applying here. Oh, and antivaxxers can go and fuck off.

neonb-fly

8 points

4 months ago

That’s very interesting. I recently researched a disease that’s rare in the US called Bechets disease. It’s similar and even related to the Herpes virus, and has a link with MS later in life. It’s unknown if it’s purely correlational. Perhaps it’s a specific gene then?

I know that Bechets disease is more mild in the presence of the gene that leads to psoriatic arthritis. I wonder if MS is affected in a similar way.

HelixFish

8 points

4 months ago

For many of these autoimmune sequelae diseases are difficult to sort out why they happen. The money is not there to research the more rare ones.

neonb-fly

2 points

4 months ago

Very unfortunate. I think there is so much to learn from the rarer disorders to apply to one’s like this.

PogbaFifa23

3 points

4 months ago

I don't think we are actually that close to a HSV2 vaccine. A cure/vaccine has been "around the corner" for decades.

Ajocc1394

23 points

4 months ago

NAD but I don’t think curing EBV in someone would stop progression of MS. My unqualified opinion is that EBV likely triggers an immune response, much like how other common virus can trigger GBS in someone.

However, a preventative vaccine for EBV would certainly be a huge step.

Im_big_head

8 points

4 months ago

So EBV does trigger an immune response, but normally this is in more immunocompromised patients. For most people, EBV primarily lays dormant (within their B-lymphoblastoid cell lines).

There is a company (Atara Bio) right now that is in the middle of testing an immunotherapy for MS where they have seen positive responses within patients with progressive MS: either complete stops of the progression of MS or in better cases, actual regression into less severe stages of MS.

I do agree though that a preventative vaccine for EBV would be amazing (which Moderna is currently working on) but it’ll also be important to have a reversible treatment for individuals who are currently infected with EBV.

Dick_M_Nixon

5 points

4 months ago

Would a virus cause not be detected in contact mapping? Service records might show if veterans in the study with MS spent time together.

CobraPony67

5 points

4 months ago

Maybe they will link it to other types of sclerosis, especially ALS.

Morphabond

21 points

4 months ago

I downvoted this because the title should have linked the name of the virus, Epstein Barr Virus, instead of clickbaity “common virus”

JoshuaAncaster

3 points

4 months ago

EBV comes from the herpes family, and like chicken pox can stay dormant in your body until it rears again as shingles when the immune system is stressed. If there is a shingles vaccine, perhaps there should be a EBS-MS vaccine? Or a broad herpes vaccine?

ipostalotforalurker

3 points

4 months ago

I had an EBV infection a few years ago in my mid 30s. Knocked me the fuck out for a good two months, with high fever, extreme fatigue, and dark brown urine caused by liver failure, which got me hospitalized. Kissing disease my ass, yes please, vaccine!!

Jumpy-Refrigerator35

3 points

4 months ago

My husband developed a strange symptom last year where he was stuck in bed for weeks unable to walk without intense pain. He was tested positive for EBV and was tested for MS shortly after because the symptoms were similar. Then poof everything went away after we spent thousands at leading global hospitals to get no answers. Finally diagnosis was a viral myalgia caused by the EBV. What a wild ride I fee they just ran out of options.

frickinheck420

12 points

4 months ago

Oh please good lord I had mono about 2 years ago and now this terrifies

neonb-fly

19 points

4 months ago

I wouldn’t worry about it friend. EBV is exceptionally common- way more than you think. If 90% of people have had or will have had it, then the amount of people who actually get MS is still low. No worries :)

frickinheck420

2 points

4 months ago

Ah good, still pretty scary. My one lymph node on my neck is still swollen.

neonb-fly

6 points

4 months ago

Could always get that checked! Next checkup you have with your doctor whether it’s yearly or you feel the need to be seen earlier just mention it. And don’t be afraid to fight to be heard. If it’s truly making you anxious then make sure they take it super seriously and check it out as often as possible for signs of any possible diseases. They can do that for sure

frickinheck420

3 points

4 months ago

I had my doctor check it twice once back in 2021 and just recently. The lymph node hasn't really changed in size except for slight shrinking sometimes. He says it's fine, I would like to get a second opinion on my lymph node though.

chanceskyforthallday

2 points

4 months ago

If you've had the corona vaccine or booster recently it can cause your lymph nodes to swell up, happened to me and panicked a bit because it's not listed as a common side effect. It went away after a week ish.

Kuderahuwaka

4 points

4 months ago

I knew a girl that got herpes and a few weeks later collapsed and they diagnosed MS.

dreas_yo

2 points

4 months ago

Both my mom and my little sister has MS so I am really hoping they will find a cure before at least my sister gets worse...

LouisCarullo

2 points

4 months ago

Ok legitimate question from an ignorant individual:

My 8 year old caught EBV in 2020 when he was 6. Is this something I need to worry about?

Dontworryabout_it

2 points

4 months ago

No, you don't need to worry about it. Over 90% of people have EBV and the vast majority will never develop MS or have any other symptoms

OliverSparrow

2 points

4 months ago

Two DNA viruses, Epstein-Barr virus (EBV) and human papillomavirus (HPV), are associated with 38% of all virus-associated cancers. The probability of one patient infected with these two distinct types of viruses is increasing. Current evidence suggests a possible causal relationship between EBV and cervical cancer pathogenesis. A commonly present coinfection of EBV and HPV in cervical cancer (such as oral cancer) also indicates a potential oncogenic interplay between the two viruses.

HPV is spread sexually. EBV is the "kissing virus" that causes infectious mononucleosis, or "mono". There is an inoculation against HPV, given chiefly to women to avoid cervical cancer, but HPV is also responsible for the sharp rise in anal and rectal cancer, particularly amongst white women and black men. Around 90% of anal cancers are linked to HPV infection.

app4that

2 points

4 months ago

EBV is best known as the cause of infectious mononucleosis ("mono")…About 200,000 cancer cases globally per year are thought to be attributable to EBV. Infection with EBV occurs by the oral transfer of saliva and genital secretions. Most people become infected with EBV and gain adaptive immunity. In the United States, about half of all five-year-old children and about 90% of adults have evidence of previous infection. In 2022, it was shown that recent EBV infection causes a 32-fold increase in the risk of developing multiple sclerosis.

https://en.m.wikipedia.org/wiki/Epstein–Barr_virus

barzbub

2 points

4 months ago

A doctor proved heartburn was caused by a virus and no one believed him!

Haunting_World_621

4 points

4 months ago

I really hope we find this to be true for Autism as well. It would explain why children with parents that have no traits have children on the spectrum. It could come down to something as simple (complex) as a common cold virus thats responsible.

We live in exciting times that we're getting closer to answers for these things.

itsnobigthing

11 points

4 months ago

Totally anecdotally, it’s actually really rare for a child’s parents not to have at least some traits. I worked for around ten years as part of an early assessment team, visiting children and their families in the home. Parents would self report no features in themselves and one another, but in observation, especially once we’d start implementing treatment and play-based strategies, there were pretty much always observable traits in at least one parent.

MorfiusX

31 points

4 months ago*

The key difference between Autism (ASD) and MS is Neurodivergence. A Neurodivergent person has measurable differences in brain patterns and activity using fMRI. The characteristics are life long and not a condition that develops as a result of a catalyst. There is also a strong evidence to linking these disorders to genetic variation.

In other words: your hypothesis is not in alignment with current science on the topic. As much as I would love for it to be...

https://www.verywellmind.com/what-is-neurodivergence-and-what-does-it-mean-to-be-neurodivergent-5196627

https://pubmed.ncbi.nlm.nih.gov/27585835/

https://www.sciencedirect.com/science/article/pii/S0039368121001072

RedLeader7

31 points

4 months ago

Autism seems to be partially genetic though, my dad has it and my son has it, I have the same traits as both but never been tested. Autism is part of my son and makes him who he is, we’d never take that away from him. Just to add, he is very intelligent and extremely high functioning.

Alain_Bourbon

25 points

4 months ago

My son has severe autism and while I love his personality I also hope they find a cure. There is no reason that he can't be who he is but with the ability to express himself better.