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M.E. in Sunday Times: "I've been made to feel a burden"

March 24, 2019

Responding to the hundreds of comments it received following Rod Liddle's comment piece on M.E. last weekend, the Sunday Times has published an article highlighting the reality of M.E. This time, the voices of people living with M.E., facing the complex challenges it presents every day, are front and centre.

The article opens with Lucy, one of our Action for M.E. media case studies, who says:

"My doctor told me never to say I had this condition, to be careful talking about it, because I would face stigma and people may not employ me in the future. Imagine being 15 years old and being told you can’t talk about something that is taking over your life. I felt so ashamed. I've been made to feel a burden by former boyfriends and friends. It has made me afraid to open up.”

We are hugely grateful to Lucy for taking the time and energy to share her story, and to Sam* and Emma for their willingness to contribute, too; unfortunately their experiences aren't featured in the article, so with their permission we will share them here instead in due course.

The article also hears from former police officer Emma, from Joanna, who describes how "every ambition I had was stripped away from me because of my illness;" and from Eloise, on her 15-year-old daughter, Ava. Eloise says:

"I ended up researching her symptoms myself, and came across M.E. online. I visited a GP to seek further advice, but had to go alone due to Ava being too unwell to leave her bed. The doctor’s unkind response was: 'If she can’t turn up to this appointment, she’s probably not going to turn up to other appointments if I book them with a paediatric specialist.' How can you expect somebody who is almost comatose, like Ava was, to come in? Do they really think that it’s her choice to lie in bed all day, rather than go out and be with her friends?"

Thank you to journalist Amber Bryce, the journalist we liaised with to suggest contributors to this story. Amber says in the article:

"Liddle’s column prompted anger and upset among many of our commenters, with women in particular voicing what it’s like to live every day in the grip of this invisible illness. Here, we share some of their stories. Please join in the conversation and share your own experiences in the comments."

Please comment on the story if you can; you can also share your thoughts on our Facebook and Twitter feeds.

*Sam is a pseudonym