A guest Blog by Joan - who was one of the organisers
of the Millions Missing Protest in Dublin on the 11th May 2017.
For images of the protest see HERE
For more about the protest- including information about ME, and other guest posts, see HERE
I have some hope, finally.
The 11th May 2017 has, I believe, given birth to something from which there is no turning back. And I say this with all the experience of a long time campaigner on a myriad of social and economic issues. But this one was different.
This one was personal.
This one was about the most fundamental thing needed to survive.
This was about the life and health of my young foster son and about the thousands of others in this country who, like him, live their lives in isolation, in dark rooms in their homes, being unable to interact with family, friends and society. And all because they were unlucky enough to catch a virus from which their body has never recovered.
May 11th 2017 - the day when M.E. patients in Ireland became visible.
The day when their voices were heard loud and proud. The day when they and their families and friends said - no more.
No more will we accept medical ignorance about this condition.
No more will we accept media misrepresentation about this condition.
No more will we tolerate the lack of attention and urgency our health services give to this condition. No more will Myalgic Encephalomyelitis be conflated with the political construct of 'chronic fatigue syndrome' or worse still just 'chronic fatigue'.
What an insulting term to use to describe the horrors of this life stealing illness!
We planned this day down to the very last detail.
We planned this day from our sick beds.
We planned this day as a group of people who had never met in real life before but who all shared the same goal. We deserve better! We deserve respect, understanding, proper medical support and a health service that stays on top of what is happening worldwide in terms of developments, research and treatments.
I have never seen so many politicians coming out to meet people as I did yesterday. Every party was represented. Party leaders came out and Ministers came out. All of them listened to us. All of them promised to help and many, many of them told us they also knew someone who had M.E. and they knew how awful the illness was. Score!
Everyone played their part yesterday. Everyone got talking to some politician or other and now it's time to pool all that knowledge and move things forward.
We got a meeting with our Disabilities Minister yesterday in Government Buildings with follow up planned, we have a commitment for a meeting with all TDs where we can present our case formally, we have commitments from many TDs who will raise PQs on our behalf.
And that's only the bits I know about!
Others have similar stories and we plan to share those stories and continue the strategy.
They truly can see M.E. now....