Monday, 25 June 2018

TDs & Senator at M.E. Visibility Protest, 10th May 2018

There was great interest and some promises made by a few Government Reps, who attended the 2018 Millions Missing Visibility Event on May 10th outside Leinster House, Kildare Street, Dublin, to help further the cause of ME patients in Ireland. 

1. Roisin Shortall TD Soc Dems with Noreen Murphy (MEAI)
 in front of the M.E. patients' Info Tag display

Those who came out and talked with us: 

Gino Kenny -PBP
Roisin Shortall -Soc Dems
Catherine Murphy -Soc Dems
John Lahart -FF
Robert Troy -FF
Michael Harty - Ind
Seán Barrett -FG
Thomas Pringle -Ind
Joan Collins - Ind
AnneMarie Mc Nally -Soc Dems
Michelle Mulherin Senator (former FG TD)
Eamon Scanlon - FF
Peter Burke -FG
Billy Kelliher -FF
Richard Boyd Barrett -PBP

Eamonn Scanlon TD (FF), Thomas Pringle TD (Ind) and Senator Michelle Mulherin were very supportive attending the event. They listened to ME Advocates Ireland (MEAI) members and attendees talk about M.E. issues and the deliberate neglect of M.E. patients by the HSE. All want to stay in touch. Senator Mulherrin said she will do her best to raise M.E. with the Oireachtas Health Committee.

John Lahart TD (FF) who also attended the event and showed support chatting to M.E. patients, their carers and families, has recently written to say that he has placed a number of Parliamentary Questions on the issue of M.E., and has written directly to the chair of the Oireachtas Health Committee, Michael Harty TD (Ind), requesting a meeting of the committee with ME Advocates Ireland (MEAI). As soon as he has a response he will be back in touch. 
He showed a lot of interest in Severe M.E. patient Noreen Murphy (MEAI) and had a lengthy chat with her and some of her extended family who were present.

Gino Kenny TD (PBP)  who attended the Millions Missing Visibility event gave much of his time talking to many attendees. He also talked to Noreen Murphy (MEAI member, Severe M.E. patient and advocate) at her car outside Leinster House where she had to lie down after she deteriorated from sitting upright in her mobility chair and from the effort of taking part in the event. He remembered her speech about her Severe M.E. that was read out by M.E. patient-advocate Moira Dillon (MEAI) in the AV Room in Leinster House in January, and he was very happy to meet her face to face. He said that he was doing all that he could to help M.E. patients. Many thanks to Gino for your continual support and efforts made in Dail Eireann on behalf of M.E. patients. 

Noreen was full of praise for her local TDs Peter Burke (FG) and Robert Troy (FF) who she said offered support and a listening ear during the protest. First out to Noreen was Robert Troy who tried to do what he could do in the Dail to get some assurance from Health Minister Simon Harris while the protest was taking place outside. He came back out to say he hadn't got anywhere but we are grateful to him for making the effort.

Many many thanks to the unwavering support of Roisin Shortall TD, Catherine Murphy TD, Annemarie Mc Nally TD and Michael Caul (MyNameis Campaign), all members of the Social Democrats Party, who attended the Visibility Protest and listened to patient-advocates talk about the M.E. issues in Ireland that need to be urgently resolved. We are grateful to them all for attending and also for providing attendees with use of the facilities at the Social Democrats office nearby.

Other TDs e.g. Richard Boyd Barrett (PBP), who were busy with party photo-calls for the upcoming Repeal Referendum, made it their business to say hello and listen to some attendees. 

Overall there was a reasonably good attendance by Government Reps at the Visibility Protest. 
Those who responded to email invitations from the hosts, ME Advocates Ireland (MEAI), and many M.E. patient-constituents to come out to meet attendees, showed good interest and hung around chatting and gave of their time. 
Attendance at the Visibility Protest may have been better if Government Representatives had not been so busy with both Repeal Referendum and the Cervical Check Scandal, etc in Leinster House on the day.

2. Noreen Murphy (MEAI)  & family with John Lahart TD FF
putting on blue ribbons provided by Noreen's grandsons for M.E. Awareness

3. Joan Byrne (MEAI) chatting with Joan Collins  TD Independent 
4. Gino Kenny PBP TD with Camilla Cruise (MEAI) and her dad 
5. Michelle Mulherin Senator with Noreen Murphy (MEAI)
6. Seán Barrett TD FG with Marian Flynn, Camilla Cruise (MEAI)
& Gino Kenny TD PBP
7. Joan Byrne (MEAI)  with Roisin Shortall TD Soc Dems 
8. Thomas Pringle TD Independent with Christine Fenton (MEAI)
  • More images of the event can be viewed HERE 
9. Alan Robertson (right) and other visibility event supporter (left)
with Richard Boyd Barrett TD PBP in background
11. Christine Fenton (MEAI), Joan Byrne (MEAI) with Joan Collins TD 

We urge all TD's to take a note of the UK Members of Parliament debate on Myalgic Encephalomyelitis (M.E.): Treatment and Research in Westminster Hall, London, on Thursday June 21st,  2018

There is an urgent need for the Irish Government and HSE to:

  • 1) commit to a date to have similar talks about the situation of ME patients. 
  • 2)  to agree a way forward with no further delay
  • 3) ‘change the conversation’ about ME in Ireland

12. Joan Byrne (MEAI), Michael Harty TD Ind and chair
of the Oireachtas Health Committee, & Moira Dillon (MEAI) Gino Kenny TD PBP
in background talking to Noreen Murphy (MEAI)
 as she rests at her car having deteriorated.


  1. I was not there on the day. Thank you so much to all of you who attended, Thank you for all of your continual hard work fighting for us.

  2. Many thanks for being with us in spirit.