Your move, Minister

Recently, Joan Byrne, a founder member of ME Advocates Ireland met with the Minister for Health, Simon Harris, TD to give him a letter impressing upon him the state of neglect by the medical profession of patients with Myalgic Encephalomyelitis here in Ireland. 

We believe the Minister can take a lead role in addressing this neglect and we look forward to hearing from him when he has had the opportunity to review the contents of our letter and respond to the points raised.

Joan Byrne,  ME Advocates Ireland
& Minister for Health, Simon Harris, TD

Millions Missing M.E. Awareness Event in Dublin - Get involved!

If we want to be heard, we need to be seen

#MillionsMissing Ireland will be taking place on  

May 10th from 11:30am to 2:30pm  

outside Leinster House on Kildare Street, Dublin 2.

Please use #

Facebook: #call4changeME 

Twitter: #call4changeME

This event is for everyone with ME, to highlight the need for health equality etc.

*Please note that although most other Millions Missing events around the world will take place on May 12th, International ME Awareness Day, May 10th has been chosen for our Dublin event because Leinster House will be occupied by TDs and other Gov reps then, unlike on the 12th, a Saturday when they are not present.

The bigger and louder we are, the better! 

So if you cannot attend perhaps a family member, 

friend, or carer, etc, might attend or pop by to say hello at any time.

This event is for everyone with M.E., 

to highlight the need for health equality etc. 

if you are a friend or loved one to someone affected by M.E. or, 
indeed, if you simply are the type of person 
that cares passionately about the neglect of others 
please pop by to show your support

What can you do?

• Write to your TD or Senator.  See HERE for details and draft letter.

• Create a Tag for display at the event. See HERE for details

• Invite your family or friends to create tags on your behalf.

• Share the M.E. Advocates Blog or social or printed media. A Blog which is full of stories and information about life in Ireland for those living with M.E.

• Write your story and email it to Corina. She will edit (if required) and add it to this Blog. Even a few words are welcome.

• Contact your local paper, or radio station.

• Join in on the actual event. Write about it on your social media pages -  Tell your friends an family. Facebook: #call4changeME  Twitter: #call4changeME

• Share the #MillionsMissing Visibility Action: Dublin, Republic of Ireland

• Connect on 
• Instagram
• Twitter
• Facebook 

• or if you are a friend or loved one to someone affected by M.E. or, indeed, if you simply are the type of person that cares passionately about the neglect of others and wants to pop by to show your support

M.E. MillionsMissing Event in Dublin

#MillionsMissing is a global campaign for M.E. health equality. 

Help us make noise on May 10th, 2018 by joining our Visibility Action in Dublin!

Image from Millions Missing Protest
11th May 2017

• For directions, and to add your name if you are attending click HERE

On May 10th, M.E. Advocates Ireland (MEAI) will host the second Dublin #MillionsMissing event in front of Irish Government Buildings. 

M.E. patients, carers, advocates, family and friends will gather at 11:30 AM until 2:30 PM in front of Leinster House, Kildare Street, to raise awareness and demand health equality for the Millions Missing because of Myalgic Encephalomyelitis (M.E.), and to highlight the total lack of appropriate medical and support services for people with M.E. in Ireland.

Information Tag Display -
We are creating an information display this year which will include Information Tags from people with M.E.

To involve as many people with M.E. as possible in this year’s event, the organisers have invited people with M.E., or their carers, to send us an Information Tag - a brief piece of information about you and your illness, or about the person you are caring for, and a photo too.

The Information Tag will be displayed for others to read at the Dublin Millions Missing event, e.g. Government Representatives, attendees, and passers-by. 

The Information Tags will represent all M.E. patients, especially those who cannot attend the event. The more representation of the M.E. community we have on display the better.

This visibility action is part of a worldwide event to coincide with World M.E. Day.

Afterwards we will post pictures of this Visibility Action on social media along with others from around the world to inundate social media and demonstrate the mass collective action for ME health equality!

• M.E. Information Pack 

Create your Information Tag for Irish Millions Missing Event in Dublin

Even if you are unable 
to physically be at the Millions Missing 
M.E. Awareness Event in Dublin, 
you can be still be represented
and make your voices heard
via our Information Display.

Please send an Information Tag
with some details about yourself 
(or your sister, mother, brother, parent, friend, etc. who lives with M.E.)
 and a photo 

to be displayed 
at the Millions Missing Dublin event 

May 10th, 2018. 

• We are creating an information display this year instead of the empty shoes display.

• To involve as many people with M.E. as possible in this year’s event, the organisers would like to invite people with M.E., or their carers, to send us an Information Tag - a brief piece of information about you and your illness, or about the person you are caring for, and a photo too.

• Your Information Tag will be displayed for others to read at the Dublin Millions Missing event, e.g. TDs, attendees, and passers-by. 

• The Information Tag will represent you if you cannot attend the event. If you are planning to be there you may also wish to be involved in this idea. The more representation of the M.E. community we have on display the better.

*******************************************************************

How to make the Information Tag: 

• We would like you or the carer to write a brief piece about yourself or the person with M.E. on an A5 sheet of paper, e.g. name, how long ill, what is missed in life, what difficulties you face having M.E., what changes you would like to see in healthcare, etc. There won’t be a lot of space on an A5 page so please be brief.

A5 size is half A4 size and the dimensions are 5.8" wide by 8.3" long. The tag will be hung in portrait orientation (longways).

• We encourage you to attach a photo of yourself above or below your information piece, as shown in the images. The photo can be any photo you have that you don’t mind giving away. You can send a photo that best represents how unwell you are. Photos like this would best represent the M.E community but are not necessary if you are unable to provide one. An old photo will do.

• The brief piece of information and photo must fit on an A5 page, as shown in the images attached. (A5 is half A4 and is 5.8inches wide by 8.3 inches long)

• Please leave some space around your information piece and photo on the A5 page, as shown in the image saying 'don't write here' on the border spaces, so that we can punch holes and add ribbon for display purposes. (We don’t want to put holes through any of your work!)

• You may hand write your information or type it up, as shown, whatever you like or whatever you are able to do is fine. Writing must be clear so that others can read it.

• Please add the hashtag #millionsmissing somewhere on the page as shown.

• We would like to have all the Information Tags laminated to protect them against any bad weather, and to have them looking well on the display board, so if you can go that one extra step further and can laminate your tag please do.

• Post your completed A5 Information Tag for this year's Millions Missing Dublin event to the following address: -

Millions Missing 

C/o 10 Springvale, 
Rathfarnham, 
Dublin 16.

or email to info@meadvocatesireland.com

******************************************************************************

NB: For anyone who can’t make their own tag we encourage you to get a family member, friend, or carer to make one for you so that you can be represented at the Millions Missing event in Dublin. If you don’t have that kind of help and would like a tag made for you, please let us know.

   

Invite your TD/Senator to Millions Missing Event at Leinster House

The MEAI organisers of the #MillionsMissing Ireland event 

have sent emails to all TDs 

asking them to come out 

and talk to us on Thursday May 10th.

We are asking you to write directly 

to your own TDs to ask them to come out and talk to us all at the event.

We can not do this event/ 

and raise awareness of M.E.

without your support. 

Thank you

We've already had a few email responses from TDs saying that they have put the event in their diary.
They are also asking for our addresses to assess whether we are constituents or not. 

This is important to them. 

Votes count.

So, could we ask you to write to your TDs directly?

• See template below if you need a hand. 
• Please add your address when writing to your TD to ensure they know the email is coming from one of their constituents.
• Of course, you can write up your own email in your own style, and perhaps give your TDs an indication of how unwell you are, that you are unhappy with the way things are for M.E. patients in Ireland, etc. 
• The original letter from the organisers to TDs gives more info on M.E. and the problems we face re diagnosis, education, support, and medical care etc.
• If you wish to add the #MillionsMissing logo/image/poster to your email, save one of the images attached
• Please add a link to this blog M.E. Advocates Ireland Blog  where there are accounts of our lives, and what we feel is needed to change our lives.
• Here's a link to all TDs:  https://www.whoismytd.com/
  
  
  Many thanks for your support.

  

Template Email: -

Millions Missing Visibility Action 2018Where: Leinster House

Date: Thursday May 10th
Time: 11:30am – 2:30pm

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 visibility action outside Leinster House on Thursday May 10th for a few hours to highlight the lack of appropriate medical and support services for those with M.E. I would be very grateful if you would come out to meet them at some time that day to hear their concerns.

The visibility action is part of a global event to coincide with World M.E. Day and is called #MillionsMissing. 

Read Irish accounts of people living with M.E. on M.E. Advocates Ireland Blog 

Many patients with M.E. are bedbound and housebound and are too ill to attend a demonstration so in their place they are sending an Information Tag with their photo and some detail about themselves, which will be on display at the event. 

I am (edit as appropriate), a M.E. patient/carer/friend of ME patient/family member of M.E. patient/advocate and if I cannot make it there personally there will be a tag in my name (or name of person with ME). I hope you will take the time to read the information tags that will be on display and learn something about the people who desperately want to get back to living a normal and healthy life.

The organisers of the visibility action 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 to come out and speak to the organisers and attendees outside Dail Eireann 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 afterwards.

We would like your support on May 10th at 11:30am to 2:30 pm please. Come out and say hello. Listen to the stories and read some of the information tags. We need a commitment from you to keep up communications about M.E. issues to progress the needs of people with M.E. here in Ireland.

Yours Sincerely,