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Local M.E. support groups: holding meetings online

May 26, 2020

Has your local M.E. support group been trying to move meetings online?

Simon, who appears in our latest short film about living with M.E. and lockdown, has shared some information and advice with us about managing this. He told us:

"Before the start of the lockdown, our local support group (High Weald Meetup) decided that we would have to meet virtually rather than in person. We normally meet every fortnight at venues near Crowborough in East Sussex, and obviously this would no longer be possible. Since doing this, we’ve found that meeting virtually requires less energy that actually going somewhere. We’ve even had attendance from members that have never got to a physical meeting. When we can get out again, we will have a Zoom session running for those who can’t attend in person."

Zoom is just one option for online meetings, and Simon's group chose it because it was easy to use. He says:

"All you need to do is register for a Zoom account on and off you go. You can download the Zoom app to make life a little easier. Meetings are limited to 40 minutes for three or more invitees. The app is available on Windows, Android and Apple, so lots of choice on what to connect with."

Here’s what Simon told us his group has learned so far.

  • Video conferencing is fine. We started with audio only, as I wasn’t sure we wanted to share how we all looked – it turns out seeing everyone’s face is a real blessing.
  • We don’t make video obligatory, however; some folk join audio only, and some just listen.
  • The first few meetings had a very awkward start – bad connections, speakers in wrong place etc, but very quickly that settled down once we all got used to it. I did have a few practise meetings with a smaller group before we really got going.
  • Zoom meeting invites will get lost – so have the meeting ID and password to hand at the start of the call so you can share with those who can’t find it. It’s always the same people who will lose the invite!
  • All that’s needed to join is the meeting ID and password – so take care where you share them. We have a private Facebook group, and also put details on WhatsApp and email. We don’t share details on any public space.
  • We meet one week in the morning, and the following week in the afternoon. This way we accommodate everyone’s rest patterns.
  • Everyone is free to join and leave when they want. All we ask is that if someone leaves early they message another group member to let us know all is OK.
  • Men are much more likely to play with the “virtual background” feature than women. Meet-up call from the Tardis, anyone?
  • These calls are not weekly team status calls – there is no agenda! Just a place for friendly chat, and to see how we are all getting on.

Simon, who worked in IT before he became ill with M.E., has very kindly offered to have a chat with anyone who would like to know more, or talk through the set-up. If you would like to contact Simon, please get in touch with us and we can arrange this.