Researching Myositis on the Internet

Researching Myositis on the web

We have all done it; gone to the web and Googled “Myositis.” We get pages of search results; however, when we read the material it may conflict with previous articles or have completely different information. So, how can we determine which site has reliable information?

  • Know your source. Information from the Myositis Association and the Muscular Dystrophy Association is going to be much more precise than information from a personal blog or unrelated website. TMA is not only for myositis patients; it has a section specifically for healthcare providers with the most recent diagnosis and treatment protocols, research, professional resources and clinical trial information.
  • Be careful with forums. Many times forums are comprised of people searching out answers just like you, and the answers may be coming from another patient based on individual experience or from someone else who may not have accurate or complete information.
  • Check the date of the article or publication.  For example, if it was written in 1998, chances are the information has been updated or completely changed since it was published.
  • Do not believe everything you read on the Internet. It is easy to make a webpage and post information but just because it is there does not make it true.

While educating yourself about myositis and related illnesses is a great step, be cautious where you are getting your information. Support groups, such as Myositis Support and Understanding, are great sources of information, personal experiences and educational resources. As administrators, we continually research to ensure we are helping to provide you with the most fact-based answers to your questions.

In most cases, your doctor and healthcare team should be your main source for answers to your specific questions about myositis. If you find that your doctor is unable to answer your questions or appears to have limited knowledge or experience with myositis, it may be time to find a doctor specializing in myositis using tools such as the MDA and TMA websites.

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Myositis Support and Understanding Association (MSU) is a 501(c)(3) nonprofit organization with a mission to improve the day-to-day lives of Myositis patients. MSU is a patient-centered organization, founded by Myositis patients, for Myositis patients, and believes education, support, advocacy, and assistance are keys helping patients and caregivers. As a nonprofit, we rely on donations for funding and volunteers to help manage a fast growing organization.

View more information: Jerry Williams

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Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease. Doctors are now trained, when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.


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Hi, this may be interesting to you: Researching Myositis on the Internet! The link is included below: --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.