May - ME Awareness Month

ME Advocates Ireland (MEAI) would very much like to mark ME Awareness Month as well as International ME Awareness Day on May 12^th and involve you in a few actions to mark the day & ME Awareness Month. We also want to tell you that you have not been forgotten & you still have opportunities to have a say despite the current situation. For obvious reasons we will not be holding the annual ME Awareness event this year. 

We normally hold an annual demonstration outside Irelands Government Buildings at the Dáil on or as close to May 12th as possible. The support over the last few years has been immense both before, during and after the event. 

This year is slightly different and we’ve taken everything online in the same way that the rest of the country has taken work and education, counselling and therapy as well as medical consultations online these last few months.

Perhaps through the crisis others will come to understand what having ME really means to our way of life.
They will never fully understand what it means to have Severe ME though. 

We will fight on, hard & all as it is.

Hopefully we will find support to a better understanding of ME, to appropriate care, to treatments and a cure.

Action 1

The first action will be an opportunity to send a single message that you would like to get across to the HSE, Government, and others.

We are interested in determining the societal impacts of Covid-19 pandemic & self-isolation on people with Myalgic Encephalomyelitis (ME) & we invite you to write something brief to report on the nature of your current situation. 

What has changed for you during the Covid-19 lockdown in relation to

- daily life & routines incl sleep, health, diet, shopping?

- support from family/friends?

- stress, worries, fears & anxieties? 

e.g. fear of having to go into a nursing home when carer help becomes unavailable during the Pandemic/fear of getting Covid-19, & worrying if medics would understand how to manage me in the context of ME/what happens if I become ill, who will look after me?/fear of having to go to A&E

If you are reliant on care have there been changes that affect you e.g. with regards to carers &/or PAs? 

Describe any current or potential level of inconvenience/disruption/discomfort.

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MEAI would like to share your information piece on MEAI’s social media pages as a record of how the current situation has affected you as well as a way of raising awareness of Myalgic Encephalomyelitis & the change to your situation as a result of Covid-19. (NB you can remain anonymous if you wish to do so as most of our platforms are public)

We will collate your responses for the Working Group, for the HSE & the Government. There will most certainly be a national review post Covid-19 & it would be useful to feed your information in one way or another. 

We are inviting you to have your say 

Action 2

The second action will be to highlight our invisibility in the eyes of the HSE and Government on a silhouette image - we have no voice; we have no visibility and we have been suffering for too long without appropriate supports.

You are invited to send a small piece of information about you stating the message you would like to send to the HSE & the Irish Government, to include the few lines below: - 

I am invisible.

I have been unwell with ME for ___ years.

I have had a ME diagnosis for ___ years. 

I have no voice and no say with regards to implementation of guidelines/medical supports/other

I am missing vital supports e.g. a ME-aware GP and a ME-aware consultant, Disability services,….

(You may add to the above piece if you wish but keep brief please)

Your information will be displayed on a silhouette image with the hashtag #LeaveNoOneBehind included on the image.as well as a blue ribbon.

Action 3 
Help spread this year's ME Awareness message by adding the 'Leave No One Behind Twibbon frame to your profile pics on Facebook & Twitter.

This year's ME Awareness theme  is #LeaveNoOneBehind. We hope that when the current crisis is over that our patient community will be remembered and that appropriate steps will be made to take care of people with ME and give them health equality that other patient groups are used to.


Twibbon Frame links: -

Twibbon frame for FB
https://bit.ly/2WjpKKK

Twibbon frame for Twitter
https://bit.ly/2SrslRY

This years Twibbon Frame was especially commissioned for us by Art on a Mission. 

Summary

YOU can participate and advocate online this year

• by writing a piece to send a message to the HSE, Government & others re your current situation and the difficulties you are experiencing, especially during Covid-19. This can be as long as you wish
• by sending a message of solidarity & support on social media using the hashtag #LeaveNoOneBehind
• by using the specially commissioned Twibbon frame on your profile pics (links below).
• by sending us a short message for the HSE & Government re the change(s) you’d like to see that would help you and others live better with ME.

It’s so important that we continue to fight for health equality despite the current crisis and that we #LeaveNoOneBehind

Where will your work be displayed?

MEAI will display all images together with your piece of information on our social media platforms.  Again, please know in advance that our pages are public & you can keep your anonymity by leaving out your name. Your image will be masked by us. However, if you wish to add a mask to your own image or to provide a new photo while wearing a mask please do so. 

Please feel free to do one or other, or both actions described above, though we would encourage people to do Action 1 because of the importance of providing information to HSE & Government as well as the Working Group.

Where to send your work

Please send your work on the two actions including your image for Action 2 before May 12th (so we can display on ME Awareness Day), to email address: - info@meadvocatesireland.com or to ME Advocates Ireland FB page via messenger button https://m.facebook.com/MEAdvocatesIreland/ or add below in comments if preferable.

Link to Our facebook event page https://www.facebook.com/events/231849921405695/?hc_location=ufi 

THANK YOU ALL

Important Message from ME Advocates Ireland

We hope that everyone will know that that is not in any way at all to take away from this current deadly situation the world finds itself in. 

People are justifiably consumed by the current situation & it is a horrendous time for us all, but we cannot ignore that there are 1000s who continue to suffer disabilities & severity of illness without appropriate care, & possibly without the care of family or friends, PAs or carers... basically in complete isolation suffering with a ceaseless chronic & debilitating condition.

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Information created by team MEAI, compiled by Moira