Myositis Support and Understanding

Men with Myositis Clubhouse Support Room
2026-09-07 08:00 - 17:00 (America/New_York) | Clubhouse
#MyositisLIFE: Men with Myositis Clubhouse Support Room
On Clubhouse

First Monday of the Month
7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT

Men with Myositis on Clubhouse
A safe space for men living with myositis to discuss physical and mental health, barriers, pitfalls, and struggles, and to make meaningful connections. No matter which type of myositis, join us for real-time discussions. You can join and listen, or join and share.
All of our Clubhouse support rooms are members only to provide the safest space possible.
Download Clubhouse from your mobile app store
Clubhouse is available for smartphones and some tablets, including the iPad.
Visit your app store and search for Clubhouse:

install the app
create your free account with your mobile number
add something to your bio (this is how other people can find you)
Join the Myositis Support Club

Using Clubhouse on your computer/laptop
There is third-party software, Clubdeck, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. Check out Clubdeck here. Join Myositis Support on Clubhouse See All Support Options See Upcoming Events

Women with Myositis Virtual Support Group
2026-09-07 19:00 - 21:00 | MSU Zoom Video Session, Video session using Zoom
First Monday of Every Month
Starting at 7 PM ET / 6 PM CT / 5 PM MT / 4 PM PT
REGISTER TO ATTEND

Session Details

Session Policies

FAQ

Join fellow women with Myositis for a private, real-time group video support session and share your challenges, hopes, fears, circumstances, and talk to others going through the same or similar situations, including the emotional aspects of myositis life with a focus on gratitude.
Support sessions are never recorded. These are private, real-time video support sessions and not the educational sessions we provide.
This session is open to all women with any type of Myositis.
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.
Check out all of our video support sessions, and other support options.

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 video support session.
When sharing, we ask you to be mindful of time so that 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 jokes, or the promotion of any outside services, products, websites, or other online links that are not related to our discussions.

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.

Running late? That’s okay. Join us anyway! Video support sessions vary in length and number of attendees but are generally 90 minutes long, so join us anytime.

Myositis Support Gets Moving on Clubhouse
2026-09-10 13:00 - 14:30 | Clubhouse
Myositis Support Gets MOVING!
On Clubhouse

Every Thursday
1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT
Join Myositis Support on Clubhouse
Join “Myositis Support Gets Moving” on Clubhouse
We welcome ALL impacted by Myositis who are interested and there are NO REQUIREMENTS to participate in this group, other than genuine interest. AND, perhaps most importantly, it is IMPOSSIBLE TO FAIL in this group. We will learn, grow and progress, together. It is not about competition.
This group is truly for all – at all stages of Myositis disease progression. And thus, each participant’s plan must be personally crafted and individualized, and in some cases, that may require the input of a physical therapist.
This weekly Clubhouse Room IS:

a space for encouragement and support as we get moving together;
a space to talk about and create your own individualized movement and protein intake plan;
a space to talk about your successes, struggles, and barriers you experience with your plan;
a space to connect and find a support partner, or find one outside of the group;
a space where NO ONE FAILS!

This weekly Clubhouse Room is NOT:

an exercise class;
a set program/plan – you create your own;
medical or mental health advice.

What is Myositis Support Gets Moving?
We know from research that movement with myositis is beneficial. As part of our Get Moving and #MyositisMovement program, in this weekly Clubhouse room, we will have personalized, self-crafted individual movement goals and will encourage the use of support partners. By support partner, we mean someone each of us chooses to partner up with and engage with weekly (or more frequently) about our progress, successes, and barriers in working our individualized plans. Our support partners become our partners in problem-solving, joyful successes, and sticktoitiveness! We may choose our support partners from someone within our group or someone we already know as a friend.
Suggested personalized plans will focus on increased movement for health/muscle preservation, muscle building, and protein intake goals so that we are eating enough protein to assist in muscle preservation, building, and loss prevention.
As just a single example, a Clubhouse group member recently shared that they utilize their assistive device to do “laps” of walking in their home while participating in groups. This could easily be or be part of an individual increased movement plan.
To get an accurate assessment of protein intake needs for YOU, use the protein calculator here.
Additionally helpful, is that after you get your results, you can scroll down and see lists of good sources of protein foods and other pertinent information. We suggest going with the protein ranges shown by The American Dietetic Association or The Center for Disease Control and Prevention, which you will see listed.
Our group is all about growing in the direction of engaging in increased movement, at an individual level, to preserve and strengthen muscle and function, while keeping a mindful eye on adequate protein intake. These behaviors can help us navigate the long-term effects of Myositis and prevent unnecessary frailty.
Note that as always, in ALL of our groups, we will also be there for each other to offer support for stressors of all kinds that participants may be experiencing in their lives.
Disclaimer: Nothing provided in the group is medical or mental health advice. Safety first. Talk to your doctor and physical and/or occupational therapist about movement that you can safely do at home. If you have a prescribed eating plan through a Registered Dietician, you should follow that plan. And if you have kidney disease, you likely have a specialized eating plan with lower protein and absolutely need to continue with that. Your treating physician’s prescribed advice is the guidance you need to follow.
Preventing frailty: What Myositis Patients CAN Do
Mary Lewis shares her key takeaways from Dr. Conrad Weihl’s presentation, “Navigating the Long Term Effects of Myositis,” specifically on movement/exercise and nutrition for building and preserving muscle mass and preventing loss of muscle mass.
Read Preventing frailty: What Myositis Patients CAN Do Protein Calculator
Added Supplement and Nutrition Information
Magnesium:

10 Evidence-Based Health Benefits of Magnesium
What Does Magnesium Do for Your Body?

New to Clubhouse?
Here are some quick steps on how to join Clubhouse, a free, audio-only app.
There are several ways you can get on Clubhouse. Below is just one.

Click here to join the Myositis Support club. This will open a window where you can click to get the app.
Or, visit the app store for your device and search for and install “Clubhouse.”
Open the app and create your profile. Photos are encouraged, and having something in your bio is helpful.
Once you join the Myositis Support club, you will receive notifications in the app when our rooms open. And, you can also see our schedule of rooms, be notified of pop-up rooms, and more.
When you join us in a Clubhouse session, you can listen or share. We welcome the entire Myositis Community!

Click to visit the Clubhouse New User Guide
Using Clubhouse on your computer/laptop
There is third-party software, Clubdeck, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device, however. So if you use Clubdeck, you won’t be able to have Clubhouse on your device running at the same time. Check out Clubdeck here. Join Myositis Support on Clubhouse See All Support Options See Upcoming Events
