sIBM Patient Video Support session, May 2020, 5 PM ET
May 29 @ 5:00 pm - 6:30 pm EDTFree
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.
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 effective treatment options available.
This session is held on the last Friday of each month at 5 PM Eastern Time. 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.
Joining from outside the U.S.? Use this time zone converter
Policies for discussions of 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 during our first session (see 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 must ask that they are left at the door.
What this video support session is NOT:
- A debate about the 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 fears 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.
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 video support session.
- When sharing, we ask you to be mindful of time.
- We will not debate or discuss politics or religion.
- Anything shared should be audience-appropriate. We will not tolerate foul language, hate speech, bullying, inappropriate comments or jokes, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.
The views and opinions of session Hosts, Co-hosts, and Volunteers are not that of Myositis Support and Understanding (MSU).
2020 IBM Patient Video Support
Start time is listed in Eastern Time.
May 29, 2020 – 5:00 PM
June 26, 2020 – 5:00 PM
Jul 31, 2020 – 5:00 PM
Aug 28, 2020 – 5:00 PM
Sep 25, 2020 – 5:00 PM
Oct 30, 2020 – 5:00 PM
Nov 27, 2020 – 5:00 PM
Dec 18, 2020 – 5:00 PM (one week early due to the Christmas holiday)