Why fact-checking is important in the rare disease world

How big is the internet? I could just say that it’s big, but I want to provide some facts to shed additional light on the topic.

According to Health IT, the internet is anticipated to reach 175 zettabytes in size in 2025. In my world, I deal in gigabytes on a daily basis, and I’ve seen terabyte storage arrays. A single zettabyte is about 1 trillion gigabytes. I hope this isn’t news to you, but a good portion of that 175 zettabytes is information that’s simply not true.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, one of the first things I did when I left the clinic was turn to the internet to learn about my diagnosis. I quickly realized that IPF is a chronic, progressive disease with no cure. I began to search for a reliable source for information about IPF. I settled on the Pulmonary Fibrosis Foundation and, of course, Pulmonary Fibrosis News. I had no idea that one day I’d be writing a weekly column for this website.

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Unfortunately, some information on the internet is false, misleading, harmful, and even a lie. As a rare disease patient, we have to employ some level of critical thinking when dealing with claims on the internet. In recent weeks, one item caught my attention. Making the social media rounds is a list that claims to be the side effects of Pfizer’s COVID-19 vaccine. I first saw it in early January. In the time since then, I’ve seen the number of accounts sharing it grow.

To be fair, I teach others about internet scams, how they can spot one, and how to validate claims made in an internet post. I begin by trying to confirm or refute the information. This practice is like the process the editors here at Pulmonary Fibrosis News use to validate my own sources. I look for a reliable source. I saw several different variations of the message accompanying the so-called side effects list. The essential message centered on Pfizer having just released the list of side effects of their vaccine. So I first went to the Pfizer website and couldn’t find any December or January release of information.

The posts were part of a filing Pfizer made to the U.S. Food and Drug Administration and were not specific to its COVID-19 vaccine. They are misleading at best. According to Science Feedback, this list has been debunked not only by their own publication, but also by several others, including Reuters. I do encourage you to review the linked references.

The U.S. Centers for Disease Control and Prevention (CDC) published vaccine safety information for the COVID-19 vaccines. The CDC listing of side effects is specific to the COVID-19 vaccines and is consistent with the information Pfizer provides to patients.

Fact-checking is important now more than ever

This is important to the rare disease community, especially as social media platforms move away from providing fact-checkers to validate information being shared. If you see something like this list, take note of what concerns you. Go to your care team with your concerns. Let them help you determine the correct information and what is right for your care.

For example, I recently began taking 25 mg of Jardiance (empagliflozin) daily. I do read the patient information provided with the medication. I learned that among the risks of Jardiance is the amputation of lower extremities. During an appointment with my kidney care team, I specifically asked about that risk. We discussed the risks and benefits of the medication, and I am comfortable with continuing to take it.

I can’t tell you why some people share information that is misleading, inaccurate, or just plain false. It’s a practice as old as time. People develop a narrative to suit the story they want to tell. I urge you to look at information relative to your treatment and health with an eye toward validating the information. It will help you make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.