Do You Know Enough about Where to Learn More? Here's How to Become Better-Informed
These days, you have to know an awful lot to know the right thing to do. People with MS can never know enough about MS. Many of us feel that our neurologists don’t know enough even though they know more than we do. So what we’ve got here is partly a failure to communicate and partly collective ignorance, some of it willful.
Distinguishing between fact & opinion
Contrary to what you might hear these days, you can distinguish between fact and opinion. To do this, people with MS need to engage in an ongoing independent study program designed by none other than yourself. Here’s how.
Learn how to research
You might already know how to type a question into your browser’s search box and read through the links that pop up. The links will include reputable information sites, blogs, opinion pieces within reputable MS forums, peddlers hawking cures, and a bunch of other sources. But do you know how to vet them and find the most accurate information?
What is a reputable source?
If you want timely, dependable information about MS and its treatments, official MS organizations are your best go-to sources. The National Multiple Sclerosis Society (NMSS), Multiple Sclerosis Association of America (MSAA), and Multiple Sclerosis Foundation (MSF) provide us with lots of other tidbits including references to other places for additional help and information. Here’s where a time commitment is important. Devote a little time to clicking through menus on these sites to get a sense of what kind of info they have. For example, the National Multiple Sclerosis Society has pages devoted to copay assistance sources and phone numbers. Local chapters of the NMSS will provide lists of area MS specialists and neurologists. Moreover, the MSAA has the MRI Access Fund that can provide a grant for a free MRI to qualifying MS patients. Visit and revisit, and take notes. Repetition will also help you form an impression of the strengths and weaknesses of reputable sites. They each feature a unique set of resources.
Once you get more experienced at determining what the reputable websites are, this becomes easier. The same rules apply for autoimmune diseases as they do for general information. Think about your news feed. I first scan headlines then glance down at the source name to choose where to spend my time learning the latest thing about whatever. Which article would you think carries more fact-checked journalism: USA Today or Gossip Cop? And what about science articles? NASA—or the New York Post? On this level, it’s all about not wasting your time. Same goes for medical info.
Subscribe to reputable health sites
There are tons of good sources. I subscribe to MS News Today, Medpage Today, Neurology Reviews, Kevin MD, and other aggregate sites that send me daily roundups of articles written by professionals in the field and well-informed patient experts. They are opinion pieces with facts, investigative pieces written with a definite point of view, and study overviews that are very technical. If you don’t want to bother with doing so much research, subscribing to these sites is the easiest way to stay informed.
Vet footnotes at the end of articles to check accuracy
This is for the geekiest, most patient kind of researcher. Although a writer that took the time to carefully notate her references is indeed admirable, you might still want (or need) to take a closer look. For example, it might be an article about herbal treatments. You might already know this, but supplements that aren’t FDA-approved likely have not gone through even a Phase I trial that determines safety and tolerability, let alone efficacy. Supporting literature about alternative treatments is largely anecdotal—and that’s not to say it isn’t beneficial, safe, and legitimate. It means let the buyer beware. We should at least know the difference.
But what if we do all of that and still can’t be sure?
Well, gosh, that happens all the time! We can’t get pat answers to all the questions we have. But learning how to research and interpret what we read goes a long way toward sorting out what we can know—and what we have yet to learn.
Do you have a fear of needles and take medication that requires injection?