Monthly Wednesday Evening Myositis Patient Video Support
November 4 @ 7:00 pm - 8:30 pm EST
An event every month that begins at 7:00 pm on day First of the month, repeating until December 2, 2020
Support sessions are never recorded. These are private, real-time video support sessions and not the educational sessions we provide from time-to-time.
Join fellow 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.
This session is tailored to those living with myositis including polymyositis (PM), dermatomyositis (DM), antisynthetase syndrome (AS), immune-mediated necrotizing myopathy (IMNM), adults with and parents of children with juvenile dermatomyositis (JDM), nonspecific myositis, and overlapping myositis with other conditions such as with mixed connective tissue disease.
This session is held on the first Wednesday of each month at 7 PM Eastern Time.
Sporadic inclusion body myositis (sIBM) patients are welcome to join this session, however, we also have a separately dedicated video support session just for those living with sIBM, as it differs from the other types of myositis in many ways.
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.
Events are listed in Eastern Time. Find the time in your timezone with 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).
How do I join video support sessions?
Zoom, the name of the software we use for all video sessions at MSU, is required to participate. The software is free.
If this is your first video session using Zoom, install the free app for your smart devices or download and install the free software for your computer at Zoom.us/download.
If you need additional help, we have Zoom help documents with more detail.
I didn’t use to have to register. Why do I now?
Because of security concerns and to ensure we are able to control who joins the sessions we now require registration. You will only need to register one time to attend all support sessions for the year. We host two different monthly video support sessions for all myositis patients, a weekday session at 7 PM ET, and a weekend session at 3 PM ET. You will need to register for each of these separately. See all events.
2020 Monthly Weekday Patient Video Support
Start time is listed in Eastern Time.
Jun 3, 2020 – 7:00 PM ET
Jul 1, 2020 – 7:00 PM ET
Aug 5, 2020 – 7:00 PM ET
Sep 2, 2020 – 7:00 PM ET
Oct 7, 2020 – 7:00 PM ET
Nov 4, 2020 – 7:00 PM ET
Dec 2, 2020 – 7:00 PM ET