I have primary progressive multiple sclerosis (PPMS). And it sucks.
Multiple sclerosis isn’t just my problem. Indeed, some 2.8 million worldwide, 1 million in the US, and 130,000 in the United Kingdom suffer from the condition. It is a condition that comes in different forms (most people have an up-and-down version called relapsing-remitting—RRMS) and afflicts people in wildly varying ways.
My version is the one that sucks the most.
Basically, rather than going through episodes (relapses) that get better (remissions) and taking disease-modifying drugs and treatments to extend the time between episodes, I just get worse. Until I die.
It’s not always great to be me, I guess.
(And, just to be clear, even the relapsing-remitting version invariably moves onto a progressive version at some eventual point).
MS is an auto-immune condition whereby your body attacks its own central nervous system. The myelin sheath—the protective layer around the nerves—is attacked (in the brain and spinal cord), thus interrupting messages from the brain to everywhere in the body. This causes multiple lesions or scars (sclerosis) in the brain and spinal cord. Multiple sclerosis results in progressively worsening cognitive faculties, and the eventual shutdown of the whole body.
Which is why in late 2018, since at the time in the UK there were no treatments at all for PPMS, I did my research, understood the science, and opted for stem cell therapy (HSCT). Yes, it cost me £40,000 ($55,000) in fundraising (thanks be to many of my readers!) to get the month-long treatment in Moscow at one of the foremost clinics. But it was worth every penny. (You can check out my video diary here.)
It was a success. My MS is stable and is not progressing (one of the few examples of “progress” not being a good thing!). I could be in a wheelchair or even bed-ridden right now, but I am not.
The point being, whether you have PPMS or RRMS, the personal and societal drain, and the massive costs in drug treatments and lack of productivity given the huge numbers of sufferers (treatments often cost around £30-40,000 per year), mean that MS is a big problem. Multiply that money by the number of sufferers and you realize that MS is worth billions of pounds and dollars for pharmaceuticals.
Of course, finding solutions to these medical problems can be a bumpy ride. After all, the big pharmaceuticals have business models that depend upon chronic illnesses that are not cured, but require expensive treatments over decades, for the rest of the sufferers’ lives. That’s what provides shareholder dividends, not cures… This is the challenge for HSCT—stem cell therapy that works negates the need for further drug treatments. And Big Pharma does not like that one bit, so the pushback against such treatments (that work!) is huge.
But I digress.
I want to talk about the Epstein-Barr virus (EBV). Yup, you’ve probably had it. In its common form, it is known as glandular fever or the “kissing virus,” and it is estimated that as much as 95% of the population has had it at some point in their lives. If you don’t think you have had it, you are most likely wrong and just didn’t realize you had contracted it.
It has long been thought that EBV has had something to do with MS. Well, a lot. Like, it could well be responsible for MS. EBV is a herpes virus that can cause infectious mononucleosis and establishes a latent, lifelong infection of the host.
Now, a massive piece of research has shed even more light on things.
The problem, historically speaking, is that the EBV causation theory has been difficult to test because so many people in the population have had EBV. What the scientific community has needed is research that is big enough to take into account these population proportions. Harvard T.H. Chan School of Public Health researchers have now provided this.
“The hypothesis that EBV causes MS has been investigated by our group and others for several years, but this is the first study providing compelling evidence of causality,” said Alberto Ascherio, professor of epidemiology and nutrition at Harvard Chan School and senior author of the study. “This is a big step because it suggests that most MS cases could be prevented by stopping the EBV infection, and that targeting EBV could lead to the discovery of a cure for MS.”
Establishing a causal relationship between the virus and the disease has been difficult because, as mentioned, EBV infects approximately 95% of adults, MS is a relatively rare disease, and the onset of MS symptoms begins about 10 years after EBV infection.
The team needed numbers, and for that many subjects, they looked to the military for help.
To determine the connection between EBV and MS, the researchers conducted a study among more than 10 million young adults on active duty in the US military and identified 955 who were diagnosed with MS during their period of service.
How did they do it?
The team analyzed serum samples taken biennially by the military and determined the soldiers’ EBV status at the time of the first sample and the relationship between EBV infection and MS onset during the period of active duty. In this cohort, the risk of MS increased 32-fold after infection with EBV but was unchanged after infection with other viruses. Serum levels of neurofilament light chain, a biomarker of the nerve degeneration typical in MS, increased only after EBV infection. The findings cannot be explained by any known risk factor for MS and suggest EBV as the leading cause of MS.
The challenge for researchers is to work out exactly what is going on that means that all MS sufferers have had EBV, but not all EBV suffers—not be a long shot—get MS. There appears to be causality there, it’s just unclear what, precisely, is going on.
Ascherio says that the delay between EBV infection and the onset of MS may be partially due to the disease’s symptoms being undetected during the earliest stages and partially due to the evolving relationship between EBV and the host’s immune system, which is repeatedly stimulated whenever latent virus reactivates.
Okay, what now?
Obviously, teasing apart and understanding that causality is important, but even more important is finding a vaccine.
“Currently there is no way to effectively prevent or treat EBV infection, but an EBV vaccine or targeting the virus with EBV-specific antiviral drugs could ultimately prevent or cure MS,” said Ascherio.
And this is huge.
It won’t help me, and it won’t help any of the other millions of MS sufferers, but the future of MS is hopefully bleak. All we need to do is roll out a vaccine for EBV, and we should be able to eliminate MS. Of course, before rolling out a vaccine, one needs to be developed, and this will require a greater understanding of EBV.
Well, in principle, yes. Look what the pharmaceutical companies (yes, them again) did in quickly finding a vaccine to put covid on the back foot. Luckily for MS sufferers, there are a lot of us, and this means that there is a greater need to develop a vaccine. If MS had been a rare disease with few sufferers, there wouldn’t have been the need or interest in finding such a treatment pathway, to finding solutions.
This is where healthcare and capitalism meet. Whilst companies may lose out on annual drug treatments, they can make up for it in national vaccine programs that would ensure the production of millions upon millions of EBV vaccines worldwide.
This is huge news. Not for me. I’ll have this until I die, no doubt. But for millions of potential people like me, and their families and friends.
This disease sucks, and the sooner we can kick it into touch the better. Good riddance to bad ailments.