Millions Missing

Millions Missing is an ME Awareness protest at Irish Government Buildings in Dublin on the 11th May from 11.00-15.00

 Shoes covered in cobwebs with word "Abandoned" Millions Missing - ME Awareness Protest in Dublin

A group of Irish Myalgic Encephalomyelitis (M.E.) patients, their carers and advocates will be holding a Millions Missing  demonstration outside Dail Eireann, Dublin, Ireland On Thursday May 11th. We will highlight the total lack of appropriate medical and support services for those with this illness and we would very much like to ask your support.

The Millions Missing demonstration is part of a worldwide event initiated by http://www.meaction.net/ to coincide with World ME Day and is called #MillionsMissing.
pairs of shoes on square for Millions Missing protest at the US Department of Health and Human Services in Washington DC . Millions Missing Dublin
Millions Missing protest at the US Department of Health and Human Services in Washington DC 2016
Many, many patients with M.E. are bedbound and housebound. They are too ill to attend a demonstration. In their place they are sending a pair of shoes with their name tag on them and some detail about themselves.
We hope you will take the time to absorb the impact of these empty shoes, and to think about the people who desperately want to fill those shoes and to get back to living a normal life.

To inform you briefly:

Description:

Myalgic Encephalomyelitis (ME) is a complex, acquired disease involving profound dysregulation of the central nervous system, immune system, energy metabolism and cardiovascular abnormalities. The main symptom is a low threshold of fatigability. It shows an inability to produce sufficient energy on demand. There are measurable adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms and a prolonged recovery period.

Classification:
Myalgic Encephalomyelitis has been classified as a neurological disease by the WHO since 1969. Over the past number of decades the condition of M.E. has been coined with Chronic Fatigue Syndrome. These illnesses are not the same thing. They have different diagnostic criteria, but they are often confused as being the same thing, causing untold harm to people with M.E.
Prognosis:

Currently there is no known cure, but early intervention and appropriate treatment strategies may lessen severity of symptoms. Restoration to full health and function is rare. Prognosis for an individual cannot be predicted with certainty. Children can be very severely afflicted.

It is estimated by the that there are approx. 14,000 M.E. patients in the Republic of Ireland (this figure is only based on data from other European countries).
There are no Consultants in Ireland specialising in this condition. This lack of attention and focus inevitably leads to neglect of patients, confusion and lack of support for their GPs. Indeed it very often creates insurmountable difficulties for patients who need Consultants Reports to access disability supports and reasonable accommodations in school/college/work etc.
The condition of Myalgic Encephalomyelitis is not taught in our medical schools and many doctors have not heard of the illness despite it being officially named after an outbreak in the Royal Free Hospital in London as far back as 1955 and being recognised and listed by the World Health Organisation as a neurological disorder..

All of this confusion leaves patients and their carers extremely vulnerable.

Our request today is simple. We would like your support on May 11th. Come out and say hello to us. Listen to our stories. Please help us promote the establishment of a forum comprising patients, ME organisations, medical personnel, health policy people and TDs in order to progress the needs of people with ME here in Ireland.
We have asked politicians to meet us on the day. See below who have agreed to do so.
We have asked them to no longer ignore us. We have been ignored for decades and this is our first time becoming ‘visible’ in such a public way.
 Many thanks from all of us living with M.E. in Ireland.
Further details:
  • Facebook Event Page 
  • Instagram
  • Twitter #MillionsMissingDublin
  • Contact me if you need further information, talk to any of us for radio, newspaper or TV interview, and I will do my best direct you to the appropriate person.
  • A big THANK YOU to City Print in cork which are supplying us, free of charge, with 10 posters.
  • Thank you IMET (Irish M.E. Trust) for funding the 200 flyers.
Politicians who have agreed to meet our representatives on the day. 
  • Anne Rabbitte Galway East TD
  • Daragh O Brien
  • Clare Daly will be there or defo someone from her office
  • Deputy David Cullinane says he will 'definitely try to make it
  • Maureen O'Sullivan says she has it in her diary
  • Mick Wallace - if not himself he will defo send someone from his office out
  • Tommy Broughan will try his best
  • Michael Healey Rae says he will do his best to be there, and he will bring up our campaign in the Dail when they resume after Easter which is May 2nd.
  • Michael McGrath will do his best
  • Peter Burke - TD, Longford/Westmeath.
  • Finian McGrath Minister of State for Disability Issues. He asked me to remind him a week beforehand
  • Jack Chambers
  • Mick Barry confirmed he has put the date in his diary
  • Paul kehoe (asked for postal address)
  • Maria Bailey will do her best to come out and see us
  • Brendan Howlin - do his best if Dail business allows
  • Michael Collins has it marked in his diary
  • Seán Crowe (Sinn Féin) will pop out to us on the 11th
  • Thomas Pringle hopes to be there
  • Jackie Cahill will defo meet us
  • Sean Haughey
  • Senator Grace O'Sullivan. Secretary put it in her diary
  • Billy Kelleher, "I would hope to be in a position to attend. However as it is too far out for the Dáil schedule I cannot give you a firm commitment incase it clashes with my Dáil obligations but all going well I expect to be able to lend my support. In the meantime I will submit Parliamentary Questions."
  • Jackie Cahill
  • Jack Chambers has added the date in his diary
  • Eugene Murphy will come out to meet us
  • Gino Kenny will definately come out to see us as he knows what a serious illness M.E. is.
  • Colm Brophy
  • Katherine Zapone's secretary will let her know
  • Sean Canney Galway East will try to come and meet us
  • Brendan Ryan -happy to come out and support us
  • Kevin "Boxer" Moran "if his schedule permits him to meet you on the day, he will"
  • John Lahart "thanked us for bringing this to his attention and wants us to make contact with him again closer to the date and he will be able to confirm if he will be able to attend our demonstration.
  • Richard Boyd Barrett will come out to see us
  • Brendan Griffin
  • John Lahart
  • Eoin Ó Broin TD:  I have put the protest in my diary and will do my very best to attend.I will also raise the issue of funding and supports for people with ME with the Minister for Health and will Sinn Féin Health spokesperson Louise O'Reilly TD. If there is anything else you can do for me please do not hesitate to ask.
  • Brendan Ryan. Happy to come out and support you.
  • Robert Troy. Happy to meet and discuss
  • Catherine Murphy. We will see you on the 11th.
  • Simon Harris (minister of health)  "intends to arrange a meeting with representatives of the group, as a reply to one of the TDs PQs, but as yet has not agreed to meet us on the day"
  •  Richard Bruton: Due to Government Business and an extremely heavy volume of engagements Minister Bruton is unfortunately unable to accept your kind invitation. He has asked me to convey both his apologies and best wishes.
  • Ruth Coppinger will be there.
  • Mattie McGrath 'will do his best to attend
  • Roisin Shortall will come out to meet us and is raising a PQ as well
  • Eamonn Ryan and others from Green Party will come out to meet us