Friday 18 May 2018

From us to you, thank you for being at the ME Visibility Event May 2018






Thursday's ME Visibility Event May 10th happened and the much planned for event outside Leinster House was a great success. 


Those of us who could be there on the day, were there. And even some who really shouldn’t have pushed themselves to be there, did so. And they did so because they have passion and compassion for their fellow patients, belief in the fact that this illness can be helped enormously if only healthcare professionals took the time to get educated about it and because they truly care about patients with ME here in Ireland.

It wasn’t easy organising everything especially when there were days when some of us were just too ill to be even online. There were posters to be organized, tags to be made, frames to be built, press to be contacted, TDs to be contacted, promotions to be followed up, printing to be arranged, T-shirt’s to be ordered, nails to be done, lifts to be arranged, much begging of friends and family to help on the day, etc etc etc. The list goes on. 


But we did it and we did it with you. 

If you sent us your tag, you were there. 

If you sent us your info for a tag, you were there. 

If you turned up you were clearly there! 


For all those who couldn’t make it because they were too ill, we held the space for you. We were honoured and pleased to do it. Your story and your pictures were read by many, many people - TDs, fellow patients, friends, public and even the policemen outside Dáil Éireann. They saw you. They know you exist.

And now the follow up begins. As part of that follow up we may be asking you to recontact some of your TDs and we hope you will do that. We may be asking those who didn’t manage to get their info to us, to send it now so that we can build up a reservoir of patient numbers for any future events. 

For now we are resting. We will process all that happened, follow up with all those who committed their support and continue our ongoing work with the HSE to ensure proper medical training of healthcare professionals for patients with Myalgic Encephalomyelitis in Ireland.

From us to you, thank you for being there...






  • Article in the Journal.ie here




M.E. Advocates Ireland founding members
Standing: Moira Dillon, Joan Byrne,
Seated: Camilla Cruise, Noreen Murphy, Christine Fenton.
Missing are Rachel Lynch & Corina Duyn


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