Also, please remember that the people involved in this film are members of the ME/CFS community too. It’s okay to critique the project (preferably in a constructive way!) but let’s not lose sight of the people behind it.

Those experiences deserve to be represented too. We don’t need to choose between celebrating disabled creativity and acknowledging the realities of severe ME/CFS. I really hope we can do both together.

As a disabled dance artist myself I believe dance can be about expression, identity and communication just as much as being physical. But with ME/CFS, any creative work has to respect so much like pacing, PEM and the reality that many people are housebound or bedbound. (3/4)

I haven’t seen the full film, so I don’t want to make assumptions about its content or intentions, but my hope is that it reflects the enormous variation within the ME/CFS community and doesn’t suggest that movement is something everyone can safely do. (2/4)

I’ve seen the concerns being raised by the ME community and I completely understand why people feel upset. ME/CFS has been so misunderstood for so long that anything involving movement can understandably raise fears about reinforcing harmful ideas. #Unbound (continued 1/4)

St Pancras lift down and ‘will be down for awhile’ Sigh.

Not only am I very unwell because I’ve missed my medication which I kept telling them about, but I’ve missed 2 work meetings now because of this hotel over the past 2 days. Most importantly though, at least I’m somewhere safe now and not in somewhere cancelling call alarms…

Left myself and another wheelchair user without a hotel originally and after a 4 hour battle I was transferred to another (unsuitable) hotel at midnight. They knew about the problem at 3pm. The other wheelchair user has had to go back to Manchester.

Just a heads up, if you’re staying at @premierinn Euston all 3 lifts have broken (aircon doesn’t work either and someone just walked out as her room is 30 degrees) & they just keep silencing their fire alarm call at reception 🚨

Why is @itsjojosiwa breaking my little heart tonight 😢 Really hope there was someone there for them at the finals… I just want to give them hugs, cups of tea and show how much they’re loved 🥰#CBBUK