Woman living with multiple sclerosis for 20 years says latest research offers hope for answers
'It potentially answers the question that I've had for almost 20 years: Why did I get MS?' says Allison Markin
The news that the Epstein-Barr virus may play a role in triggering multiple sclerosis has brought "reassurance" to Allison Markin, who has been living with the condition for two decades.
"It potentially answers the question that I've had for almost 20 years: Why did I get MS? [And] how did I get it?" said Markin, who lives in Penticton, B.C.
"When you are diagnosed with any illness … you wonder, what did I do? Did I do something wrong? Did I eat something wrong? Did I hurt myself?" she told The Current's Matt Galloway.
Markin was diagnosed with MS in 2003, a potentially disabling disease where immune system cells attack the protective coating on nerve fibres. She's heard many theories about what triggers the condition — including a suggestion, offered by a naturopath when she was first diagnosed, that a nerve was damaged when she had a wisdom tooth removed.
But last week, Harvard University researchers presented a large-scale study that they say provides compelling evidence of a causal association between MS and Epstein-Barr (EBV). This type of herpes virus is widespread in humans, but the researchers say their findings strongly suggest it sets some people on the path to developing MS.
If it was a virus and that's no fault of mine or anybody else's, that gives me a little bit of comfort, frankly- Allison Markin
Markin had Epstein-Barr 10 years before her MS diagnosis.
"If it was a virus and that's no fault of mine or anybody else's, that gives me a little bit of comfort, quite frankly," Markin said.
The Harvard study accessed blood samples stored from more than 10 million people in the U.S. military, taken between 1993 and 2013. Recruits who did not show signs of previous EBV infection were tracked, with a subsequent comparison between those who later developed MS, and those who did not.
Only one of 801 MS patients did not show evidence of prior EBV infection, and researchers said they found no evidence that other viral infections played a role.
The link between EBV and MS has long been suspected among researchers, but Toronto physician Dr. Jiwon Oh said the Harvard research puts that speculation to rest.
"Because of the size of this study and how long that these people were followed over time, this has given us really strong evidence showing that there likely is a causal link," said Oh, medical director of the Barlo Multiple Sclerosis Program at St. Michael's Hospital in Toronto.
But while EBV affects almost 90 per cent of the human population, the infection does not mean a patient will definitely develop MS. Figures from the MS Society of Canada suggest an estimated 90,000 Canadians are living with the disease, or one in every 400 people.
"It's probably a combination of many things, including genetics, as well as potentially other environmental factors that all come together with having had an Epstein-Barr virus [infection]," Oh said.
Disease is like a 'part-time job'
Markin said her MS affects her vision, and brings numbness in her hands. It also leaves some of her muscles weak, and affects her ability to walk.
But the symptoms vary day to day, so each morning she does a "systems check," to figure out how much she'll be able to do that day.
"It's been part of my identity for 20 years, and it's easier for me to think of it as a part-time job," she said.
"I live with it, I manage it and I continue with my life."
That involves "figuring out what helps me, what makes me feel better, what may trigger inflammation," she said. She also consults with her health-care team about what treatments are available "to manage my symptoms better than the day before."
Oh said the Harvard study's findings probably won't have an immediate impact on existing treatments for MS, but she doesn't want people to think the research won't contribute in the long run.
It may be used to help draw support for additional studies, she said, as well as "fuel, number one, the development of an EBV vaccine."
Some research to develop Epstein-Barr vaccines is already underway, including a small study just started by Moderna.
Oh thinks the research will speed up the vaccine development time frame, but warned that "good science and good therapeutics take time" — possibly "many, many years."
Markin said the idea that we will one day be able to stop people from developing MS is "very exciting."
"But the hope for me is that someone who might be going through symptoms — today, tomorrow, next year — will get better answers than I did when I was first diagnosed," she said.
Written by Padraig Moran, with files from the Associated Press. Produced by Julie Crysler, Matt Meuse and Ryan Chatterjee.
