CanDoMS, Multiple Sclerosis, MS Nutrition, MS Myths, Nutrition
Finding nutrition information online is easy. In fact, it is hard to escape! But how reliable is the information you find online? How good is the advice from your favorite Instagram account, from your favorite celebrity, or your well-meaning neighbor or friend?
Living with MS means also living with information overload. Sorting through information overload is tough but it is even tougher when “Dr. Google” joins the sales pitch—oops, I mean conversation. And, there is SO MUCH information available these days, it is difficult to know what information is trustworthy and what is just there to separate us from our money.
Multiple Sclerosis (MS) is a disease with unknown etiology (root cause) and no known cure. The role of diet in disease susceptibility and disease course is unknown. At least that is what the preponderance of clinical studies have concluded at this time. That is one of the frustrating things about science… it changes. Or rather our understanding of the problem changes, which may cause the science to change.
Consider this: The world used to be flat and now it is round. But, was the world ever really flat or was it our understanding that it was flat? The same is true of all scientific study. New or deeper understanding in one area can shine a light on something that may have been accepted as settled science which leads to new conclusions.
Nutrition is a growing area of MS. But it is in its scientific infancy. Which is another frustrating thing about science...it is slow. Like molasses! Meaningful randomized controlled studies to investigate the benefits or harm of nutrition on human health require a LOT of time and money and are very challenging to conduct– so they don’t get done often. Would you dedicate a decade or more of your life to a specific dietary pattern to contribute to the evolution of scientific understanding? Would thousands of others? Who would pay for it? What if the dietary pattern turned out to be harmful rather than beneficial? Time consuming, expensive, and complicated. Dr. Google doesn’t adhere to the rigor of science so he/she has LOTS of information!
Many of the ideas proposed by Dr. Google are based in pseudoscience. Pseudoscience is fake science, a collection of assertions that do not satisfy the requirements and practices of true science. It is easy to publish lots of information when you are not held up to the rigors of science.
Living with MS is frustrating. Scary. Difficult. Challenging. Expensive. Maddening. [insert your own descriptive here] It is perfectly reasonable that these feelings make us susceptible to myths that sound promising. It is a very human response. Unfortunately, living with MS in the information age also means we need to be able to identify and avoid pseudoscience and instead look to credible and reliable resources.
Keep an eye out for red flags:
- People selling supplements, protocols, or regimens often exaggerate claims about their products. Or they just plain lie. Speak to your healthcare team about any supplements BEFORE making changes to your diet.
- Celebrities and social media influencers are NOT credible sources of health information.
- Has someone claimed to heal, beat, reverse, or overcome MS? What do these words mean in the context of a disease with no known cure?
- Is someone suggesting that working with them will help you get to the “root cause” of MS? Again, what does this mean in the context of a disease with no known cause (etiology)?
- Are they using a lot of “sciency” jargon? Consider this… scientists typically try to break complicated topics down into easy to understand words that the general public can understand. Pseudoscientists use complicated language to lend an air of validity to their argument (an air of validity, not actual validity).
- Do they use fake medical diagnosis? “Leaky Gut” comes to mind. Hint: this is not a clinical diagnosis.
- Does the article or influencer offer simplistic conclusions from a complicated study?
- Does their argument or sales pitch rely heavily (or solely) on personal testimonials or anecdotal stories of success. “It worked for me, so it will certainly work for you!” Nope.
- Have they identified “Good” (or MS-Friendly) foods and “Bad” foods? Hint: There is no evidence to support these claims. Food is meant to be enjoyed not feared.
- Is the answer found in demonizing foods? Gluten, dairy, sugar, nightshades come to mind. Hint: having MS does not mean these (or any other food) needs to be avoided. At least not as it relates the MS.
- Is there a pressure to buy something? Has someone suggested that you need to remove a significant number of foods from your eating pattern BUT because the nutrients these provide are important, you must replace them with supplements—which they are all too happy to sell you? Hint: your body prefers to get nutrients from food and supplements are unregulated.
- Is there a suggestion that the regimen, protocol or “diet” will heal a long list of conditions? Like, say, an autoimmune diet or protocol? Hint: There are over 50 different autoimmune diseases. Each has a different etiology and different manifestation. Most protocols are arbitrary food rules NOT medical nutrition therapy (MNT) and will not heal, beat or reverse disease. Examples include: Type 1 Diabetes, Crohn’s Disease and Systemic Lupus Erythmatosus (SLE). All are autoimmune diseases, they each have different nutrition impact needs that would not be adequately addressed by an arbitrary autoimmune protocol.
Finally, a few tips for evaluating health information on the internet:
Sometimes the line between science and pseudoscience is hard to see. Use of the label “alternative”, “natural” or “holistic” can be a sign of pseudoscience. Or not. Lines can get blurry. Alternative Medical Systems including Traditional Chinese medicine, Ayurveda, Naturopathy, Homeopathy and Functional medicine all offer different therapies and modalities that are outside of conventional medicine. If you are unsure of what these are theis a great resource. So is your healthcare team.
When navigating the internet for health information, government and educational sites with URLs that end in ".gov" or ".edu” are a great place to start.
MedlinePlus From the National Library of Medicine created a great resource for
When you encounter health information you are unsure about, consider these questions:
· Are they trying to sell me something?
· Are studies cited?
· Look beyond the headlines. If the information is really important to you, dig deeper. Look for multiple sources.
· Is the article supported by research published in well-known (scientific) journals?
· Does it list the references and studies used to support the claims?
· Just remember if it sounds too good to be true, it probably is.
For more informati0n, check out this webinar that I co-presented with the nutritional epidemiologist Kathryn Fitzgerald (Johns Hopkins). Here are some other resources from Can Do MS that you might find helpful: