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Sunday, April 16, 2017

Millions Missing Protest in Dublin

The following details were compiled by Moira Dillon, and includes the work done by many others 
to bring this protest to the awareness of the public, the media, the government and the HSE!

On May 11th there is an ME community-organized protest at Leinster House, Kildare Street, Dublin as part of the Millions Missing Global Protest. ME patients, advocates, caregivers, family and friends will join together to protest the lack of government recognition and medical/public education on ME.
Due to the nature of ME, it is anticipated that many people will not be able to attend the Dublin Protest in person. There are several ways to participate virtually if you cannot attend.


HERE ARE WAYS YOU CAN PROTEST VIRTUALLY, OR HELP TO GET THE WORD OUT

  • EMAIL YOUR CONSTITUENT TDs 
    • to encourage them to come out and meet with us at the #MillionsMissing event in Dublin 11th May. 
    • (Template for a draft email organised by Joan Byrne see at bottom of this post) 
    • Website Link, including list of Politicians who have agreed to meet the protesters on the day: Millions Missing


  • SEND SHOES 
    • You may have heard that we are collecting empty shoes to represent those who cannot protest. The idea is that you pick a pair of shoes that can represent your personality before being ill or something that you can no longer do since being sick. But any pair will actually do. Please send a tag with your name, age if want or small detail of what it is you are missing, could even put a photo with it. If family or friends are attending on your behalf they can bring them and stand beside them on the day. We would love to get as many as possible from around the country. (Contact me For Address)
  • TAKE A PHOTO OF YOUR SHOES
    • On May 11th take a pair of shoes (or several) and put them on your doorstep, lawn, or driveway. Take a photo and post it on social media with the hashtag #MillionsMissing. Anyone can participate, whether you are a patient or a friend expressing solidarity.
    • You might pair the shoes with a sign that expresses what the empty shoes mean to you. Some examples: ‘I cannot walk to the end of my driveway’ ‘I cannot wash my hair’
  • PROTEST ON SOCIAL MEDIA
    • On May 11th, post selfies on social media (Twitter, Facebook, Instagram, etc) – in your bed, home, wheelchair, at work, wherever you live – to help us show online the millions who are missing from the global protest. Use the hashtag: #MillionsMissing and all the photos will be aggregated.
    • You might also consider typing slogans or holding your own protest sign with a slogan in your photo. Examples:-
      • Missing my life for 22 years because of ME / Missing in action since 1991 because of ME
      • Missing equity in research / Missing adequate medical care
      • Missing a doctor who believes me
      • Missing college / Missing my family / Missing running in the park
      • Missing but no longer silent
  • INSTAGRAM
  • People from all over the country can send photos privately (by messenger/pm) on facebook to Moira Dillon or by  email to take part in the Millions Missing Dublin Instagram page (so called because Dublin is where the protest will take place)
    • Just send an image of yourself and some information e.g. 
      • Missing my life for 22 years because of ME / Missing in action since 1991 because of ME
      • Missing equity in research / Missing adequate medical care
      • Missing a doctor who believes me
      • Missing college / Missing my family / Missing running in the park
      • Missing but no longer silent 
      • You don't have to be on Instagram to take part
  • Here's the Instagram page:- https://www.instagram.com/millionsmissingdublin/
  • MILLIONS MISSING TWIBBON
  • CONTACT THE MEDIA: RADIO, NEWSPAPERS, TV
    • Contact your local paper, radio station and tell them your story about life with M.E.
    • See List of all newspapers
    • Contact national radio stations/programs.
    • Contact TV programs, like The afternoon show, TV 3 etc.
    • Contact Joe Duffy's Liveline, to aks him/his team, to dedicate (part) of the show on the day to the protest. Talk with people at the protest and at home
      • twitter
      • email: joe@rte.ie
      • phone: 1850-715815

  • M.E. INFORMATION PACK
    • An ME information for  TD’s, HSE and other interested parties:  The situation of Myalgic Encephalomyelitis patients in Ireland 2017 has been compiled by Joan and others 
    • Please contact me and I forward the PDF of same.
Template for emailing TDs:


Insert Your Address
Insert Date

Dear 

I am writing as a constituent of yours to ask for your support.

A group of Myalgic Encephalomyelitis (M.E.) patients, their carers and advocates will be holding a demonstration outside Dail Eireann on Thursday May 11th for a couple of hours to highlight the total lack of appropriate medical and support services for those with this illness and I would like to ask if you would pop out to meet them at some time that day to hear their concerns. 

The demonstration is part of a worldwide event to coincide with World M.E. Day and is called #MillionsMissing.

Many, many patients with M.E. are bedbound and housebound and are too ill to attend a demonstration so in their place they are sending a pair of shoes with their name tag on them and some detail about themselves. 

I am (edit as appropriate) an M.E. patient/carer/friend of ME patient/family member of ME patient/advocate and if I cannot make it there personally there will be a pair of shoes in my name (or name of person with ME). I 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.

The organisers of the demonstration have already emailed you explaining how awful this illness can be and of the neglect suffered by thousands of people in Ireland. As a constituent I am asking you personally to come out and speak to them outside the Dail for even a few minutes. Most of them are patients themselves and they will pay a very high physical price for their efforts – with many likely to end up being extremely ill for an extended period of time afterwards.

We would like your support on May 11th. Come out and say hello. Listen to the stories. We need a commitment from you to help 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.

Please don’t ignore us. We have been ignored for decades and this is our first time becoming ‘visible’ in such a public way. 
Many thanks



Sample Template for Liveline:  joe@rte.ie

Dear Joe

my name is... and I am ....  living with the illness M.E. for the past  ...  years. The illness has greatly changed my life.  (or add your details  if you are a carer ...) And Tell a little about yourself.

There are many of us in Ireland, but our illness is often not recognised by the state, or by the HSE.

We hope to change that by holding a demonstration at Leinster House on the 11th May.  The demonstration is part of a worldwide event to coincide with World M.E. Day and is called #MillionsMissing.

We have asked our representatives in the government to meet us. See list on this website page, who have agreed to meet us.

I will be at the protest  or 
(use whatever is appropriate  in your circumstances)
I most likely won't be there myself, like many, as we are unable to travel, or even leave our homes due to the severity of illness. We will be represented by our carers, or by our shoes... Again, please see website page.

Is there any chance that liveline can give us airtime that day? 

We would so appreciate if we can share our stories: From the protest, and from our homes.

Kindest regards

your name, address  and phone number


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Corina