ME Awareness Month 2025 - bring ME out of the shadows

 

  It is ME Awareness Month 2025

Here is a reminder of what to expect during our ME Awareness campaign this year...

What is ME Awareness Month?

ME Awareness Month brings the global ME community and their supporters together to share stories, raise awareness and educate others about the challenges for individuals living with ME.

Please help us to raise awareness and educate others about ME by

1. liking, sharing and commenting on our daily awareness posts during the month of May.

2. taking part in our May Awareness activities if you are able to.

What is this year's campaign theme?

ME Advocates Ireland's ME awareness campaign this year is all about 'bringing ME out of the shadows' -

1. about informing you about ME and particular supports if you are newly diagnosed with ME, or if you have had ME for some time;

2. about educating others about ME including advocates, carers, family members, healthcare providers, community support staff and others;

3. and about including 'OTHERS LIVING WITH ME', i.e., carers, advocates, family members, friends and any other supporters.

The campaign theme is "Bring ME Out of the Shadows" and we will be using the hashtag #bringMEoutoftheshadows

How can I join this year's campaign?

ME Awareness Day activities will take place on May 12th and we would like to involve you or your carer/advocate/family member/friend/other.

This year we really want to include OTHERS LIVING WITH ME in our awareness campaign to help 'Bring ME Out of The Shadows', i.e., carers, advocates, family members, friends and other supporters.

If you live with ME and would like to participate in our awareness activities, please see all five options below.

NB: We are aware that some people with ME may not be able to participate in any of our suggested activities. We hope that your carer/advocate/ family member/friend/other supporter will help you with an activity or participate on your behalf.

The first three activity options, 1-3, are more inclusive for people with quite limited function; option 4 and 5 require more input and are aimed ONLY at those who are able to manage them.

We encourage you AND especially carers, family members and friends to be involved in as many options as possible, if you can.

Awareness Activity Options

1. Interact with our posts daily

You can contribute to the "Bring ME Out of the Shadows" campaign by interacting daily with the awareness posts on our social media pages, with the goal of raising awareness about ME and supporting our collective mission to enable and empower those affected by ME. All you need to do is like, share or comment on our daily posts.

2. Use Hashtags

You can contribute to this years awareness campaign by using the following hastags in your own awareness posts or when you share or comment on our posts:

#bringMEoutoftheshadows (hashtag bring ME out of the shadows)

#MEawareness (hashtag ME awareness)

#MEawarenessmonth (hashtag ME awareness month)

3. Use a Twibbon

Twibbons for your Social Media Pages (Facebook, Instagram, X/Twitter, etc)

Awareness Month ‘Twibbons’ are designed to visually express your support and to raise awareness of a particular issue or campaign.

Our campaign theme this year is "Bring ME Out of the Shadows".

The slogans on our Twibbons this year are:

'Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Very Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Very Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'

Please use a 'Twibbon' image of your choice as your profile picture on your social media pages throughout ME Awareness Month. There is a large choice of images to choose from.

All you have to do is download an image of your choice to your device from our Twibbon post and then upload the image as your profile picture to support our ME awareness campaign during the month of May.

Twibbons can be accessed from our post about twibbons linked here

#bringMEoutoftheshadows

4. Short Story Campaign: 'Life with ME - bring ME out of the shadows'

We are calling on members of our ME community to take part in an online personal short story campaign around the theme 'Life with ME - bring ME out of the shadows' to mark ME Awareness Day, May 12th, 2025.

If you are living in our ME community and are able please send us 5 lines about your ‘Life with ME’ to be part of our short story campaign on ME Awareness Day, May 12th to #bringMEoutoftheshadows

We will do the rest to publish your short story anonymously on May 12th.

Send your 5 lines about ‘Life with ME’ to

info@meadvocatesireland.com

or via any of our our private message portal/DM before May 10th.

5. Your Story Through Art Exhibition - 'bring ME out of the shadows'

ME Advocates Ireland (MEAI) are inviting artists living with ME in our community in Ireland or elsewhere in the World to take part in an online art exhibition to mark ME Awareness Day on May 12th, 2025.

Artists living with ME include patients, their carers, advocates, family members and friends.

We invite you to share your experience of life with ME through art with this year's theme in mind - 'Life with ME - bring ME out of the shadows’.

All types of artwork will be accepted - painting, drawing, photography, knitted/crocheted work, sculpture, pottery, other.

To submit your artwork

Please take a clear photo of your artwork or ask someone to do that for you and send it by email to

info@meadvocatesireland.com

or via private message on any of our social media pages.

Important Details!!

Artwork to be submitted by May 8th 2025.

Online Exhibition Launch: May 12th, 2025.

Online Exhibition runs: May 12th - May 31st.

"When you're working with your hands, conversations will happen"

- Caroline Schofield

We would be grateful if you could support us and the ME community during ME Awareness month from May 1st to May 31st 2025 to 'bring ME out of the shadows'.

Thank you for your support to #bringMEoutoftheshadows and to raise #MEawareness

Remembering Eimear Forde

We are writing with heavy hearts to share the news that one of our own has passed away.

It is with our deepest sorrow and great sadness that we inform you of the death of our beloved friend and fellow patient Eimear Forde last week. 

Eimear died peacefully on Easter Monday. 

Our deepest condolences to Eimear’s parents, her three children, their dad, family members, friends, former colleagues and to her friends in the ME community. 

Rest in peace Eimear. 

Suaimhneas síoraí dá hanam 🕊

Death Notice: 

https://rip.ie/death-notice/eimear-forde-galway-loughrea-592067

🕊

Eimear contributed so much to our ME community, sharing information about Severe ME. 

She was resilient despite chronic ill health, spoke up and asked questions about Severe ME all the time raising awareness of the cruel, challenging and horrendous aspects of Severe ME.

🕊

We commend Eimear for the support she gave to others, for raising funds and awareness for ME, a challenging sacrifice when she was so unwell.

Eimear will be forever loved and always remembered by her heartbroken friends in the ME community in Ireland and internationally.

Launching our ME Awareness Campaign for May 2025 - 'bring ME out of the shadows'

     

Launching our ME Awareness Campaign for May 2025

 'bring ME out of the shadows'

May is Myalgic Encephalomyelitis (ME) Awareness Month which is just 3 weeks away.

What is ME Awareness Month?

ME Awareness Month brings the global ME community and their supporters together to raise awareness, share stories about life with ME and educate others about the challenges for individuals living with ME.

Please help us to raise awareness and educate others during ME Awareness Month 2025 by

1. liking, sharing and commenting on our daily awareness posts.

2. taking part in our awareness activities if you are able to.

What is this year's campaign?

ME Advocates Ireland's May awareness campaign this year is about bringing ME out of the shadows -

1. about informing you about ME and particular supports if you are newly diagnosed with ME, or if you have had ME for some time;

2. about educating others about ME including advocates, carers, family members, healthcare providers and community support staff;

3. and about including 'OTHERS LIVING WITH ME', i.e., carers, advocates, family members, friends and any other supporters.

We will be using the hashtag #bringMEoutoftheshadows on our posts and in our conversations.

How can I join this year's campaign?

ME Awareness Month activities will take place throughout May to involve you or others living with ME - your carer/advocate/family member/friend/supporter.

If you or others living with ME would like to participate in our awareness activities during May, please see all five options below.

NB: We are aware that some people with ME may not be able to participate in any of our suggested activities. We hope that others living with ME will help you with an activity or participate on your behalf, and for themselves too. We recognise the importance of others living with ME and their enormous support to ME patients.

Awareness Activity Options

The first three activity options, 1-3, are more inclusive for people with quite limited function; option 4 and 5 require more input and are aimed ONLY at those who are able to manage them.

We encourage you AND especially others living with ME to be involved in as many options as possible, if you can.

1. Support awareness posts

You can support the 'bring ME out of the shadows' campaign by interacting daily with the awareness posts on our social media pages, with the goal of raising awareness about ME and supporting our collective mission to enable and empower those affected by ME. All you need to do is like, share or comment on our daily posts.

2. Hashtags

You can contribute to this year's awareness campaign by using the following hastags in your own awareness posts or when you share or comment on our posts:

#bringMEoutoftheshadows (hashtag bring ME out of the shadows)

#MEawareness (hashtag ME awareness)

#MEawarenessmonth (hashtag ME awareness month)

3. Twibbons

"Twibbons" are designed to visually express your support and to raise awareness of a particular issue or campaign.

Our campaign theme this year is 'bring ME out of the shadows'.

The slogans on our Twibbon choices include all severity ranges; they are:

'Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Very Severe Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Very Severe Myalgic Encephalomyelitis - Shadows of Our Former Selves'

'Profound Myalgic Encephalomyelitis - Shadow of My Former Self' or

'Profound Myalgic Encephalomyelitis - Shadows of Our Former Selves'

Please use a 'Twibbon' image of your choice as your profile picture on your social media pages throughout ME Awareness Month. There will be a good choice of images to choose from.

(We will share the twibbon choices on May 1st)

4. Short Story Campaign: 'Life with ME' - bring ME out of the shadows'

The theme for the Short Story campaign is 'Life with ME - bring ME out of the shadows'.


We are calling on members of our ME community in Ireland to take part in an online short story campaign to mark ME Awareness Day, May 12th, 2025.




How you can be involved in the short story campaign

Whether you are a patient or other person living with ME you may wish to highlight what you want others to know about your life with ME to 'bring ME out of the shadows', a piece which could include your current concerns or concerns for the future.


You can write a short piece OR 5 sentences about your Life with ME.




What individuals with ME could write about

- Many individuals with ME lack knowledge about their illness when first diagnosed and experience lack of knowledge among healthcare providers and in some cases suffer from stigma and gaslighting.

- As well as losing good health and finding that there are no clear healthcare pathways, people with ME suffer many losses - they lose careers, financial security, hobbies, friends and family; they lose the ability to go on family holidays and to attend family events.

- Despite the multiple challenges they are living with, people with ME constantly feel isolated in the shadows because of disabling ill health, the enormous losses endured, and because of the lack of appropriate healthcare pathways.




What others living with ME could write about

- Others living with ME. e.g., carers, advocates and family members could write about the issues they face as they try to support the person with ME, to highlight difficulties in 'life with ME'.

- Or they could write about the person they are supporting.

Please write a very short piece or send 5 sentences if you are able.




Where to send your short story / 5 sentences

Please send us your short story / 5 sentences via email to: info@meadvocatesireland.com

or send it to us via private message on any of our social media pages like this one.

We will do the rest and publish your piece anonymously on May 12th, ME Awareness Day.




Important Details

Short Story to be submitted by May 10th, 2025
Short Story Launch: May 12th 2025




Exceptions

We are aware that individuals do not have the functional ability to write a short story; if you are able, a few words or one line will do instead. Or maybe a carer or family member can support you.

Writers!!

We are aware that we have writers in our ME community...so if anyone wishes to write a longer personal story, you are welcome to do that.
We will publish your longer story anonymously on May 12th.

5. Your Story Through Art Exhibition - 'bring ME out of the shadows'

ME Advocates Ireland (MEAI) are calling on artists living with ME in our community in Ireland or elsewhere around the World to take part in an online art exhibition to mark ME Awareness Day on May 12th, 2025. Artists living with ME include patients, their carers, advocates, family members and friends.

We invite you to share your experience of life with ME through art with this year's themes in mind - the themes of this year's art exhibition are 'Life with ME' and 'bring ME out of the shadows'.

The artwork will depict your ME symptoms or experiences, or your hopes for better acknowledgement and understanding.

Understanding life with ME can be challenging for some people and it can be difficult for others to fully understand the impact of ME on those living with ME.

All types of artwork will be accepted - painting, drawing, photography, knitted/crocheted work, sculpture, pottery, other.

To submit your artwork

Please take a clear photo of your artwork or ask someone to do that for you and send it by email to info@meadvocatesireland.com or via private message on any of our social media pages.

Important Details

Artwork to be submitted by May 8th 2025.

Online Exhibition Launch: May 12th, 2025.

Online Exhibition runs: May 12th - May 31st.

"When you're working with your hands, conversations will happen"

- Caroline Schofield

Developments in our ME Space

We will update you about the developments in our ME space during the last year including details about the HSE's response to the ME Community’s incredible Open Letter campaign launched on May 12th 2024. You can still sign the Open Letter if you wish: bit.ly/4doeHpS

We would be grateful if you could support us and the ME community during ME Awareness month from May 1st to May 31st 2025 to 'bring ME out of the shadows'.

#bringMEoutoftheshadows

#MEawareness

#MEawarenessmonth

What will ME Advocates Ireland (MEAI) do during this years ME Awareness Month campaign?

We will:

- share a choice of twibbons on our social media pages for you to choose from;

- share awareness posts on our social media pages throughout May;

- remind you of the hashtags we will be using and encourage you to use them too;

- remind you that you are invited to take part in a short story campaign & then publish your personal short stories on May 12th, ME Awareness Day;

- remind you that you ate invited to particpate in an online art exhibition & then hold an art exhibition of your art work on May 12th, ME Awareness Day;

- update you about the developments in our ME world during the last year including sharing the HSE's response to the ME Community's Open Letter campaign with you;

- signpost useful information about ME as well as community supports on our webpages;

- direct you to useful organisations/websites/support groups.

#bringMEoutoftheshadows

#MEawareness

#MEawarenessmonth