All events about ME should now be virtual

[NelliePledge]

I’ve made this point regularly over the last couple of years that ME organisations should be taking a lead on running events that do not force people to be either physically present to be able to participate or excluded.

Now the healthy people involved in the ME community are restricted as well and will be for the foreseeable future hopefully they will all wake up to options such as webinars, virtual reality. I’m not saying these formats will completely overcome the issues we experience due to ME obviously people will still struggle to concentrate for long sessions (although maybe you could be innovative over the agenda and run events over a few days with a couple of hours a day or have it once a week for a month). This will be the time to abandon ‘we’ve always done it in this location and in this format’.

 

[Kitty]

Absolutely agree!

I’m not saying these formats will completely overcome the issues we experience due to ME obviously people will still struggle to concentrate for long sessions (although maybe you could be innovative over the agenda and run events over a few days with a couple of hours a day or have it once a week for a month). This will be the time to abandon ‘we’ve always done it in this location and in this format’.

It's important that the researchers and clinicians meet face-to-face, though, as so much important networking goes on during coffee and meals breaks, and it would take a lot of time out of their schedules if they only met for a couple of hours a day. But if it's all live streamed, and then videos are put up later for those of us who need to watch a bit at a time, it should allow many people with ME to access it.

I'd love to see another innovation, if it were possible: access to researchers' speech notes and slides. It's great that transcripts of some events are are provided, but the way people speak can make them hard to comprehend, and the volunteers making the transcripts can't edit them due to the risk of information being missed, sense changing, or emphasis being shifted. If people planning a presentation know that a summary of key points would be useful when they begin, might at least some of them may be able to do this without needing any additional time?

 

[NelliePledge]

They won’t be able to meet face to face for months if not years so that mingling will have to be done virtually. Recordings are important and should always be done but it doesn’t allow active participation which should be available for people who are able to take part in that way.

 

[MEMarge]

It will be interesting to see what happens with the Priority Setting Partnership, announced at the CMRC conference. Many of the sessions are remote, but a few included in person days.