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#MyositisLIFE: IBM Patient Video Support
July 30 @ 5:00 pm - 7:00 pm EDT
Join fellow inclusion body myositis patients for a private, real-time group video support session and share your challenges, hopes, fears, circumstances, ask questions and talk to others going through the same or similar situations, including the emotional aspects of myositis life with a focus on gratitude and living our best lives with IBM.
Support sessions are never recorded. These are private, real-time video support sessions and not the educational sessions we provide.
This session is tailored to those diagnosed with or suspected of having sporadic inclusion body myositis (sIBM), sometimes referred to as inclusion body myositis (IBM). sIBM patients are welcome to include their spouse or care partner in these sessions.
We host this separate video support session because sIBM is very different from the other forms of myositis. sIBM is a slowly progressive and degenerative muscle disease with no available treatment options, outside of an exercise program.
Registration is required. After registration, you will receive an email with details to join. See the link to register at the top of this page.
You do not have to turn your camera on and you will never be required to speak.
Monthly Inclusion body myositis session is held on the last Friday of each month starting at:
5 PM Eastern Time
4 PM Central Time
3 PM Mountain Time
2 PM Pacific Time
Support Session Guidelines
We don’t like to impose rules, however, to keep everyone safe please read over the policies below.
Session Privacy, Trust, and Behavior
To keep everyone feeling safe, here is a list of our general, but important, policies.
- Anything shared in the video support group session stays there! Just as in our closed online support groups, we trust that you will follow this strict rule. No sharing of private discussions outside of the support session.
- When sharing, we ask you to be mindful of time so everyone has a chance to share.
- If you have something to add to the discussion, we ask that you do not interrupt while someone is speaking. The hosts will announce at the start of the session how each session will run.
- Anything shared should be audience-appropriate. We will not tolerate hate speech, bullying, inappropriate comments, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.
When discussing COVID-19 . . .
When discussing COVID-19, to keep all of our members safe and comfortable, and to protect the integrity of the conversation, we will continue to enforce the rules we put in place below. We will have a no-tolerance policy for these rules and thankfully have not had to use them. We will give one warning and then will ask you to leave the session if you will not comply. We are not equipped to answer the questions about science or conspiracies, and therefore we must ask that they are left at the door.
We will NOT have or provide:
- A debate about science;
- A political discussion;
- A conversation about conspiracy theories;
- Medical advice (beyond what is listed as criteria to call your doctor).
What we hope this video support session will be:
- A safe space to voice your experiences and ask questions among similarly situated people who understand;
- A place to get ideas for staying sane while practicing social distancing, isolation, or quarantine;
- A chance to get ideas for staying safe if you must continue participating in the outside world;
- An opportunity to see that you are not alone.
The views and opinions of session Hosts, Co-hosts, and Volunteers are not that of Myositis Support and Understanding (MSU).
How do I join video support sessions?
Zoom is available for almost all devices including computers, laptops, smartphones, and tablets.
To install Zoom on a computer/laptop: Visit the Downloads page on Zoom’s website and download/install the Zoom Client for Meetings.
To install Zoom on a device: Visit your App store and search for Zoom and install.
Then, visit our Events Calendar and register for the monthly support sessions that interest you.
If you need additional help, we have Zoom help documents with more detail.
Why do I have to register?
Because of security concerns and to ensure we are able to better provide a safe space and control who joins the sessions we require registration. Register once to attend this monthly session. After registration, you will receive an email with the details to join on Zoom, which also includes a link to add it to your calendar.