Myalgic Encephalomyelitis (ME) May Awareness Event
Tuesday May 14th, 2019
11:30 am - 2:30 pm
Leinster House
The May ME Visibility Event takes place during ME Awareness Month on Tuesday May 14th outside Leinster House, Kildare Street, Dublin at 11:30am - 2:30pm
At this year’s Visibility Event, being organised by ME Advocates Ireland (MEAI), patients & advocates, families & friends will once again be raising awareness of Myalgic Encephalomyelitis (ME) & the thousands of people with ME in Ireland who are invisible because of ME & Government inaction.
We will be using the hashtag #Call4Change4ME on social media, and calling on the Irish government, the Minister for Health, and the HSE to plan to change the situation for people with ME in Ireland who are currently invisible to them. People with ME are invisible not just because of this debilitating neurological illness but also because of lack of Government action.
People with ME suffer from a lack of friends & family, career & hobbies because they are so unwell and house-bound, too ill to maintain relationships, which eventually break down. And they are too ill to work. Very severe ME patients who lie paralysed, tube-fed in darkened rooms are rendered even more invisible. They are not physically out in the world - no one knows they are there.
There is a disparity between how one feels living with a chronic illness, versus how imperceptible that experience is to the outside world. This incongruence presents many challenges that can confound illness. ME, an invisible illness can be met with scepticism, others think you look well and don't look sick at all.
ME patients suffer multiple invisibilities. Currently ME is invisible because there’s no national policy for ME, no healthcare pathway, no consultant, no ME-aware medics, no training of medical students & professionals, no criteria adopted & no treatment.
Conversations do not begin with invisibility. Change won't happen there. The potential for change can only be found with visibility, so we are coming together and calling on the Irish Government and HSE to have a conversation to begin the change to the neglect of people with ME.
We Call 4 Change 4 ME because in the eyes of the Irish Government & the HSE people with ME in Ireland are invisible
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Prevalence rates, based on international rates, for ME patients in Ireland in 2019 are between 10,000 and 19,000
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WHAT'S HAPPENING AT THIS YEAR'S VISIBILITY EVENT?
• We will be talking to Gov Reps, TDs, etc again.
• We will have a group of people in attendance wearing white face masks to highlight the invisible nature of ME & the invisibility of ME when it comes to Government policy etc.
The masks will be worn for a short time during the visibility event to signify that we are still being ignored & are invisible to the Minister for Health & HSE.
• We will capture the mask-wearing moment on a live Facebook feed.
• We will involve you who can't attend in the mask idea. See details on the masks below.
• We will have last year’s Information Tags on display, as well as any new tags you send this year.
• There will be a ‘Tree for ME’ event during the main event where we will plant a tree in memory of all who have died from complications with ME and we will add small tags with the names of ME patients who have died.
• We hope to have press & media in attendance, as we did at the two previous visibility events in May 2017 & 2018.
• We hope that everyone who attends the event will wear blue clothing. The colour blue represents Myalgic Encephalomyelitis (ME).
• We will provide blue ribbons to wear. Blue ribbons represent Myalgic Encephalomyelitis (ME)
Event Page
HOW CAN YOU BE PART OF THE CALL 4 CHANGE 4 ME EVENT ON TUESDAY MAY 14TH?
• You & family, friends & carers can attend the event outside Leinster House on May 14th or invite others to attend on your behalf.
Please use the event link to ask others to attend & share widely here
• You can be part of the mask-wearing event this year by sending us an image of you wearing a mask to represent the fact that you are ‘missing’ - missing life, family, friends, career, social life, good health, appropriate healthcare pathways, etc, & to represent the fact that when it comes to the HSE & the Government there are a lot of things invisible e.g. ME policy, appropriate care pathways, diagnostic criteria, ME-aware medics & trained health professionals, treatments, etc.
(there are more details on the mask idea below)
(there are more details on the mask idea below)
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| The Mask represents Invisibility, this year's theme for the ME Awareness Event |
• You can be represented at the Call 4 Change 4 ME event by having an Information Tag with information about you on display at the event.
See images below showing the Information Tag Display board & tags we used at last year’s event.
(there are more details on Information Tags below)
• Share the Call 4 Change 4 ME event page on social media- on Facebook, Twitter, etc to encourage others to attend on May 14th.
The more people who attend the better so that we can use our collective voices to call for change to the situation of ME in Ireland.
The more people who attend the better so that we can use our collective voices to call for change to the situation of ME in Ireland.
See link to event page here.
• Invite your local TDs to this year's Call 4 Change 4 ME awareness event to come out and chat to those attending - to patients, advocates, friends and families of those with ME. See link to TD list below
DETAILS ON MASKS & INFORMATION TAGS BELOW:
MASK
Keeping up with the invisible illness & invisibility theme we are planning that people in attendance at the Call 4 Change 4 ME event will wear masks for a short time during the event to signify that ME patients are still being ignored & are invisible to the Minister for Health & HSE.
(We will be organising the masks for a group to wear at the visibility event.)
We encourage you to be part of the mask-wearing event this year by sending us an image of you wearing a mask to represent the fact that you are ‘missing’ & please send a brief piece about you - about who you are, how long you have had ME, what makes you feel invisible, what changes you’d like to see made by the Government & HSE. Just a few lines to add when you send us your photo.
How to organise a photo of you wearing a mask at home:-
- Order a mask online, buy one in a local shop, or make one, or have somebody make one for you using a sheet of paper/cardboard. If you buy a mask or make a mask it doesn't have to be exactly like those in the images but as close as possible, i.e. white and blank.
- Order a mask online, buy one in a local shop, or make one, or have somebody make one for you using a sheet of paper/cardboard. If you buy a mask or make a mask it doesn't have to be exactly like those in the images but as close as possible, i.e. white and blank.
- Take a selfie of you wearing the mask or get someone to take your photo.
- Add the hashtag #Call4Change4ME to a photo of you wearing your mask as in the pics attached below.
- Send the photo to us to share on social media.
- Send some information about who you are, how long you have had ME, what makes you feel invisible, what changes you’d like to see made by the Government & HSE to make ME visible. Just a few lines to add when you send us your photo. See sample information below.
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| Mask to represent invisibility & blue ribbon to represent ME |
Example info:
Invisible for 12 years with Myalgic Encephalomyelitis (ME). Invisible from my life - my friends & family, my career & hobbies. Invisible because there’s no national policy for ME, no healthcare pathway, no consultant, no ME-aware medics, no criteria adopted & no treatment. In the eyes of the Irish Government & the HSE I am invisible #Call4Change4ME
NB There are a few ways to send your mask image & information.
Send by email to info@meadvocatesireland.com
Or send by pm to the ME Advocates Ireland Facebook page via the message button. Page link here
Or send by pm to the ME Advocates Ireland Facebook page via the message button. Page link here
NB- Sending your image & info means you are happy for it to be posted on social media eg FB, Twitter, Instagram.
INFORMATION TAG
We are using the Information Tag display that we used at last year’s event again this year. The display contains information tags which have information about patients who sent info & a photo to us last year.
(Please see images from last year’s display below in pics attached)
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Information Tag Display Board at the 2018 ME Visibility Event
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To involve as many people with ME as possible in this year’s event, the organisers would like to invite people with ME or their carers to send us an Information Tag - a brief piece of information about you & your illness, or about the person you are caring for, & a photo too to be displayed as an Information Tag at the Call 4 Change 4 ME visibility event.
(NB There is no need for those who already sent Info Tags to us last year to send again as we kept your tags)
Your Information Tag will be displayed for others to read at the Call 4 Change 4 ME visibility event, e.g. TDs, attendees, & passers-by. The Information Tag will represent you if you cannot attend the event.
If you'd like to make your own information tag, see how to do that below.
If you would like us to make your information tag, please send us your information and your photo to our email address: - info@meadvocatesireland.com
Or
Send by pm to the ME Advocates Ireland Facebook page via the message button. Page link here
Or
Send by pm to the ME Advocates Ireland Facebook page via the message button. Page link here
NB-Sending an information tag means you are happy to have your image & info posted on social media and displayed at the visibility event.
How to make the Information Tag yourself at home or have someone you know make one for you.
- Write a brief piece about yourself or the person with ME 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.
(NB - A5 size is half A4 size and the dimensions are 5.8" wide by 8.3" long)
- We encourage you to attach a photo of yourself above or below your information piece. The photo can be any photo you have that you don’t mind giving away. You can add a photo that best represents how unwell you are.
- Please add the hashtag #Call4Change4ME somewhere on your tag.
- Laminate the tag if you can.
The tags will be hung in portrait orientation (longways) as in image above.
EVENT REMINDER
What: - Call 4 Change 4 ME - May visibility event
Where: - Outside Leinster House, Kildare Street, Dublin
When: - Tuesday May 14th, 2019
Time: - 11:30am – 2:30pm
Event link: - here
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