It’s estimated that over 250,000 people in the UK have received a ME/CFS diagnosis, with many others living undiagnosed.
Myalgic encephalomyelitis, or chronic fatigue syndrome, is a long-term condition that causes extreme tiredness and problems with thinking, memory, and concentration in people. It can happen suddenly, and at any age.
This year, we’re taking part in ME/CFS Awareness Week, which takes place between 11 and 17 May.
We want to raise awareness of this condition, and show how arts and music venues can cater to those whose lives are affected by ME/CFS.
Cat’s story: Living with ME/CFS
Cat McGill, co-founder of Live to your Living Room, was diagnosed with ME/CFS in her late teens, following a bout of glandular fever. Many ME/CFS cases are triggered by infections, stress, or a combination of the two.
With support from her teachers, friends, and parents, Cat managed to get through her A levels, go to university, and live a “relatively normal” life for a while, “albeit being prone to getting knocked out by random illnesses a couple of times a year.”
Cat found that ME/CFS crept up on her gradually in her 30s, and even with a previous diagnosis, it took her a while to accept what was happening. At this time she started “collecting chronic illness diagnoses,” and it’s estimated that over three-quarters of ME/CFS patients have at least one other pain-causing condition.
“Right now I’d say I’m experiencing moderate symptoms of ME/CFS, occasionally dipping into severe. I’m trying to find a balance that allows me to keep working, but thankfully I have a very supportive team at Live to your Living Room, so I’m able to take time out if I need to.”
ME/CFS and attending gigs
“It’s difficult to explain how ME/CFS affects the gig-going experience as it’s different for everyone,” said Cat, “it can even vary on different days for the same person!”
For Cat, lighting and sound are issues when going to gigs in person. “I really struggle with artificial lighting and high sound levels; they make me feel tired really quicky. As a result, I don’t go to gigs in-person that much anymore. The last time I did, it took me over a week to recover!”
So, what can arts and music venues do to support people with ME/CFS and other conditions?
“The best thing venues can do is provide enough information up front so attendees can make an informed decision about whether they can manage a gig in that venue. For example, let them know if there’s a quiet space where they can still hear the music but are away from the crowds and noise.”
There are also lots of useful resources and initiatives for venues, including All In by Arts Council England and the Live Events Access Charter by Attitude is Everything.
Live to your Living Room: providing an alternative way to enjoy live music
Live to your Living Room came into being during the pandemic as a way for gig goers to enjoy music during lockdown. However, it soon became evident that it was “levelling the playing field,” giving people with disabilities like ME/CFS a way to experience live music in their own home.
“We heard this over and over as lockdowns were lifting at the end of the pandemic,” said Cat. “I remember reading one comment from a disabled person on X saying, “only Live to your Living Room has remembered that we’re here.”
Online gigs, like the ones Live to your Living Room facilitates, have been a real boon for Cat. “I love online gigs so much because I have complete control over my sensory environment. I can control the noise levels, watch lying down in bed if I need to, and if it’s still too much, I can catch up with the recording when I’m feeling up to it.”
One of the great things about Live to your Living Room is that it fully includes the online audience and doesn’t treat them as an afterthought.
“When we run hybrid gigs, that is, performances that are both online and in-venue, both audiences are equally important. We have an MC welcoming everyone to the gig, background music playing to create a bit of atmosphere, and Q&A opportunities with the artists. Little touches to let the online audience know that we care about their experience and want them to have a fantastic time.”
“It’s important to stress that we’re not looking to replace online gigs,” said Cat, “we just want to enable people who may struggle to get out into venues to have more choice in how they participate in the live music scene.”
Live to your Living Room provides a free ONEAudience quick start guide for venues that want to get started with hybrid gigs and build an engaged, loyal audience, both offline and online.
Download your free guide today
“Enjoying the music they love on their terms”
“I can’t overstate how isolating and lonely ME/CFS can be,” said Cat. “It’s frustrating to watch the world carrying on while you’re stuck in bed, and it’s easy to feel completely invisible when your social media feed is full of people having fun at festivals and gigs.”
“It used to be a choice of not going to a gig, or going to a gig and staying in bed for a week afterwards. Now with online events, people with ME/CFS can enjoy the music they love on their terms.”
Find out more about ME Awareness Week on The ME Association website
Sources
- https://www.artscouncil.org.uk/developing-creativity-and-culture/diversity/all-in
- https://attitudeiseverything.org.uk/industry/live-events-access-charter/
- https://www.autoimmuneinstitute.org/research_updates/co-occurrence-of-me-cfs-and-chronic-pain-conditions/
- https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/