‘As my ME developed I became completely bedbound. I couldn’t speak, I couldn’t open my eyes and I couldn’t talk to my family. I just laid in the darkness in constant pain.’
Seventeen-year-old Hollie Cullen wants to show how debilitating Myalgic Encephalomyelitis (ME) can be, in order to combat negative misconceptions surrounding the condition.
Her story was broadcast on ITV News West Country (W) on Thursday 15th October.
‘Not many people actually know what ME is,’ explains Hollie, who's from Barnstaple in Devon.
‘They think you’re just tired and are using it as an excuse not to go to work or school, when actually it’s a severe and sometimes life-threatening illness.
‘Even the reaction I got from healthcare professionals was negative.
‘One nurse told me I should smile more and another told me I should join a gym.
‘The symptoms I had were extreme exhaustion, migraines, noise sensitivity and the fact that movement would make me feel weak, dizzy and sick.’
With Fixers, Hollie has helped create coffee cup sleeves, to share details of her experience, facts about ME and links to websites offering further information.
To take a closer look at the sleeves or read more about Hollie’s resource, click on the image below.
Ceri Rutter from the Plymouth and District CFS/ME Group supports Hollie’s campaign and appears in the broadcast.
‘I like the idea. It’s very distinctive and very simple,’ Ceri says.
‘It’s bringing out a message about a very complex illness.
‘Hopefully people will read this in a quiet moment with their coffee and go away feeling that they know more.’
Hollie adds: ‘I would feel that I have achieved something if I asked someone about ME and they said they know a bit about it.
‘It doesn’t even have to be very much - just some recognition as to what it is.’
For more information and help with this issue, visit www.actionforme.org.uk or www.meassociation.org.uk.
To find more resources about ME, or to watch Fixers films, click on the image below.