In almost every area of endeavor there are those people who do work that rises above the rest, making them stars even among others who also accomplish great things. There are a lot of people who write blogs about MS and there are a number of them who shine above the rest with really stellar work. But then there are the superstars – those few writers who can be trusted to always get the information correct and add their own touch, making their blog not only enjoyable to read but also crammed full of information. Gavin Giovanonni, MD., is one of those superstars of the MS blogosphere.
Dr. Giovannoni, otherwise known as Professor G, is from the Department of Neurology, Royal London Hospital, London, and was a featured speaker at the recent annual meeting of the Consortium for MS Centers. I was afforded the opportunity to spend time discussing his expertise in blogging and use of social media to connect the latest research with his patients’ interests as well as his own.
He explained what drove him to the use of social media to communicate with his patients and what he discovered when he became comfortable with the electronic media. “The anti-science movement of CCSVI drove me to social media,” Professor G said. CCSVI – chronic cerebrospinal venous insufficiency – has since been disproven as a cause of MS but it had diverted close to $10 million dollars in research funds to study, almost entirely in response to outspoken people in the MS community who chose to ignore the basic rules of science. Professor G said he grew weary of answering the same questions over and over about CCSVI and turned to the internet to post information so his patients might look there for answers, freeing more of his time for other patient needs in the clinic.
He said social media and the internet ‘represents the democratization of knowledge and doctors are no longer the gatekeepers” of medical knowledge. All of us can access much of the same materials doctors can, and he soon found other ways to create a presence online for the greater good. He has found ways to engage with the people living with MS by sharing the latest science based research news, answering general questions that he was hearing more than a few times in clinic, and helping people manage their MS. He believes by using social media to connect with his patients and others, they can take ownership of their own care.
He uses the pop culture reference and says he sees coming “Uberization of treatment and I predict ten to fifteen years from now chronic disease (management) will be available on online platforms worldwide and change health care delivery.” The uber movement takes the middleman out of transactions and allows people to go directly to the source of services they might need.
More than once I have referred readers to his daily blog, Multiple Sclerosis Research, and particularly to his ongoing tracking of known cases of PML associated with the use of natalizumab (Tysabri) . If you want to see the best chart that outlines the risk of PML, you need to look no further than Professor G’s blog.
There are often lively discussions on his website, many of which can get quite technical in nature and I asked if he has a certain group of people who read his blog and he said it is split about in half between people with MS and others.
Professor G also gave a technical presentation at the meeting in the session titled Biomarkers in MS: The Role of CSF. His part of the talk was CSF Axonal Injury Markers. He said cognitive functions should be a high research priority, and the problems with cognition ‘drive unemployment rates. Europe’s unemployment rate is high, half of the MS population is on unemployment before they reach an EDSS 3,” which would be described as moderate disability, affecting daily activities, but still not severe. The invisible symptoms of cognitive function need a new treatment strategy, according to Professor G. He believes when people with MS use compensation techniques for cognitive shortcomings, it adds to MS fatigue. He says we need to rethink MS and understand it can also be a dementia disease and recognizes most people would not like that label. He is a proponent of shifting research directions and looking at neuroprotection and remyelination as the priority targets to help with the cognitive demands of MS.
One of my favorite things about Professor G is he isn’t afraid to think out loud, and he often posts ideas that aren’t in the mainstream of research or traditional medicine. He is also known to poll his readers and ask what people with MS think and solicits their ideas and incorporates them into his work where feasible. Professor G has been making the international rounds for speaking, and that included his talks in Indianapolis. If you check into his blog site you will find his lecture notes and slide shows for many of these talks.
I still enjoy brushes with the stars and spending time with Dr. Giovannoni was a special moment of the CMSC meetings for me, as I have been a fan of his forward thinking work for several years. Meeting him in person reinforced my impression that he belongs on that very short list of elite social media expert bloggers and genuinely nice people. Check out his work and let me know if you agree.
Wishing you well,