Coronavirus (COVID-19) and Myositis Update

Resources for Myositis patients about COVID-19

May is Myositis Awareness Month and our adapted theme brings focus to the pandemic. Join us for High Fives from the Heart: #MyositisLIFE in a Pandemic World. We welcome the public to join us, along with our fellow patients and caregivers. Get started at UnderstandingMyositis.org/awareness

We are committed to providing you with trusted information and resources regarding the Coronavirus (COVID-19) pandemic. Below you will find such resources, as well as links to take action, videos, and upcoming events.

The best way to prevent catching or spreading coronavirus is often and thorough hand washingsocial distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. 

Updated 4/28/2020: The CDC has added new COVID-19 symptoms. Visit https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html to learn more about symptoms. If you are experiencing symptoms of COVID-19 please contact your doctor.

Official guidelines have been provided to the States about when and how to reopen. Stay informed by tuning in to your state and local public health officials. Find your state and local public health department online at https://www.naccho.org/membership/lhd-directory.

Wearing Fabric Face Coverings in Public

The CDC now recommends Americans wear fabric/cloth face coverings in public, in addition to the other Slow the Spread guidelines, such as social distancing, to help slow the spread of COVID-19. The link below is the CDC who provides information about fabric face coverings and how to make them. Share a photo of you in your mask for Myositis Awareness Month.

CDC Briefing with Chronic Disease Community

MSU co-sponsored, together with CreakyJoints, the Global Healthy Living Foundation, and many other organizations, a virtual briefing with the U.S. Centers for Disease Control and Prevention (CDC), John Hopkins Medicine, U.C. Davis Health, and organizations representing the chronic disease community on COVID-19. Watch the recording.

Take Action: The Arthritis & Rheumatic Disease COVID-19 Project

Help us understand how myositis patients feel about COVID-19/the novel coronavirus

Myositis Support and Understanding (MSU) is excited to partner on The Arthritis & Rheumatic Disease COVID-19 Project and we invite you to participate in a survey over time to help researchers and clinicians better understand how patients with myositis and other autoimmune conditions feel about COVID-19/the novel coronavirus.

See Full Survey Details Join the Survey

Download COVID-19 and Myositis PDF

We have created a PDF file with information and resources for myositis patients and caregivers related to the Coronavirus (COVID-19) pandemic. We update this file when new information is available.

Opening Up American Again

The White House and the CDC have released guidelines for states about how and when to begin relaxing some of the mitigation protocols. Each state, together in coordination with surrounding states, will determine their own strategy.

Managing Myositis Patient Care During the COVID-19 Public Health Crisis with Dr. Rohit Aggarwal

Keeping you supported, updated, and educated, especially during a public health crisis like the COVID-19 pandemic, is our highest priority. On May 13th, Dr. Rohit Aggarwal joined us to talk about what we have learned about COVID-19 and myositis, and he answers patient-submitted questions with topics including proper precautions to take to stay safe, information about immune-suppressing medications and IG, and so much more.

Find your local public health agency

In addition to following federal guidelines, each state and territory – and even city – has their own as well. For information about your local area, utilize the locator provided by the National Association of County Health Officials (NACCHO).

Watch COVID-19 and Myositis

4/1/2020 – Watch COVID-19 and Myositis, a Live Q&A Webinar with Dr. Lisa Christopher-Stine and Dr. Christopher Mecoli, both with Johns Hopkins Myositis Center. Additional Q&A is also provided.

Myositis 101 for patients, COVID-19

Dr. Rohit Aggarwal, Co-Director of Myositis Center of the University of Pittsburgh, Chair of Medical Advisory Board of The Myositis Association (TMA) and author of the book “Managing Myositis: A Practical Guide” explains to patients in simple words about COVID-19, as well as what should we do.

Additional COVID-19 Resources

From the News

Print this so you don’t bring coronavirus home

“With the help of physicians and infectious disease experts, we built a tip sheet to make sure you don’t bring the virus back with you. Here are printable versions in English, Spanish and Chinese.” CNN

“One dangerous coronavirus ‘self-check test’ is circulating on social media. Here’s why you should avoid it.”

From CNN – In an interview with Dr. Robert Legare Atmar, an infectious disease specialist at Baylor College of Medicine, CNN shares a myth-busting article.

Myositis patients and caregivers can connect with others who understand what they are going through by joining our support community via the Inspire iOS app or by visiting our Myositis Support Community.

Myositis Support Community

Free, anonymous, 24/7 support, just for the myositis community

Myositis patients and caregivers can connect with others who understand what they are going through by joining our support community via the Inspire iOS app or by visiting our Myositis Support Community.

See Upcoming COVID-19 Education, Activity, and Support Events

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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

2 Comments
  1. Jerry Williams 2 months ago

    Hi Lizzy. That is a great question. We would suggest discussing that with your physician and an attorney (if needed). It is a topic we could address during our live webinar Tuesday at 2 PM ET if you are able to join.

  2. Lizzy 2 months ago

    Hi! Great resources. I have a question about Advance Care Directives. Mine currently states that I don’t want to go on a ventilator. Given CV treatment often ends in a ventilator, where can I get some thoughts and advice and guidance on updating my ACD – what are the chances of coming off the vent? This is my main worry at the moment…

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© 2020 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

The best way to prevent catching or spreading coronavirus is thorough hand washing, social distancing, and social isolation. Should you begin experiencing symptoms of coronavirus, which include fever, cough, and shortness of breath, please contact your doctor immediately. View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

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