“After almost 19 years of M.E. I one day heard about 'BRAME' – the Blue Ribbon for the Awareness of Myalgic Encephalomyelitis campaign – and immediately felt very excited.

 

Getting a name for my condition and illness in 1987, after 7 years of undiagnosed M.E., had been a really momentous day at a very personal level. I had felt validated and believed after years of character assassination, and hostility from most quarters.

Now, hearing of an international awareness campaign felt just as significant – but at a global level.

On the same day, I heard the terms “severely affected” and “25% M.E. Group” for the first time. For years I had been unable to read much from the journals of the main M.E support groups because I was too ill. What I did read made me feel even more isolated. These people were forming swimming and cycling groups and contemplating childbirth. One person sent out booklets on carpentry.They didn't seem to be talking about the M.E. that I had. But in the 25% group everyone was virtually housebound and/or bedbound. Many were 100% bedbound like myself.

These were my people!

But what did they look like? Based on a conservative estimate of 180,000 M.E. Sufferers in the U.K., one quarter would mean 45,000 severely affected sufferers ….

I pictured, each time I fight alone in my room with some egomaniacal bureaucrat who's denying me my civil/human rights, not just me justifying and explaining, but me with 44,999 others also in their beds behind me.

I still couldn't grasp it, but it was getting very exciting indeed!

My friend said that 45,000 people was enough to fill the new Stadium of Light at Sunderland. I'd never seen or stood in a football stadium full of people – so that didn't do it. But I had been to the Theatre Royal in Newcastle.

I rang them up. Their seating capacity was approximately 1,250. That would mean 37 Theatre Royals full of people with M.E., like me. We would completely fill Grey Street. Wow!

I decided to make an “installation” to represent these newfound kinspeople. I thought of drawing a circle to represent each person – but thought some joker might say we amounted to 45,000 big fat zeroes. (It has been said before by 'experts':- “B-class people with A-class aspirations who just can't hack it”. Circa 1980).

So, we have the ribbons.

This is a 'living' piece of artwork which is touring the U.K. And you are invited to become a part of it. Mostly it is viewed spread on the floor. People select an unsigned sheet and sign it like a visitors' book. Some put comments as in an art galleryor book of remembering.

When I look at the installation I see many references:

it reminds me of a War Memorial – and we are battling daily.

I think of prisoners crossing off the days they have been confined, counting up until their release llll llll llll

I see graffiti, a wall of friendship, a petition, a protest, a vote of confidence.

When I wear the Blue Ribbon I don't want to take it off. I feel connected, validated and that my experience is real.

I am no longer invisible.

What really inspires me is is the idea of 100% of the ME/CFS community and their supporters coming together to achieve recognition.

Please feel free to experience the 45,000 installation in any way appropriate to yourself. I hope it is evocative for you.

Thank you for listening.

Anita Roddam Nov 1998.

I have since learned that some estimates of ME/CFS sufferers in the U.K. are of a figure nearer to 500,000.

25% of this number would be 125,000 severely affected sufferers (approximately 3X what you see here in the installation).”