Thursday, 21 August 2025

HSE National Myalgic Encephalomyelitis (ME) Clinical Guide Project

  

  

Information about the National ME Clinical Guideline Project is now live on the HSE CDI microsite.










This is an historic step after decades of waiting, finally opening up space for the ME community to be recognised, involved, and heard.....finally giving ME and the ME community a voice and a place at the table after decades of waiting.
Importantly, this resource will also give patients something official to show doctors, services, or anyone who may not understand or recognise ME. After years of inconsistency and denial, this is a vital step forward.
If you don’t remember all the details, just let people know that a simple browser search for “HSE ME” will take them straight to the official HSE site.

Please see that site via the link: https://www.hse.ie/eng/about/who/cspd/me/me.html

We will post links to the microsite when there are important updates.






Friday, 8 August 2025

‘Let Art Be a Way to Witness and Remember'

  







Online Art Exhibition to mark Severe ME Awareness Day 2025




On Severe ME Day, we stand in solidarity with those living with Severe Myalgic Encephalomyelitis, a devastating disease that leaves many patients confined to their beds, silenced, and invisible.

An estimated 25% of people with ME are severely or very severely affected, yet their suffering remains largely overlooked in healthcare, research, and policy.

This day, observed on August 8th in memory of Sophia Mirza, a British artist who died at 32 from Severe ME, demands recognition of the human cost of medical neglect and systemic inaction.

People from the global ME (Myalgic Encephalomyelitis) community were encouraged to express their creativity, share their stories, and offer their unique perspectives through art as part of our Severe ME Day exhibition.

The art in this exhibition speaks where words often fail. Some pieces are raw and urgent; others, quiet and contemplative. Together, they bear witness, give voice, and pay tribute to lives hidden by illness and to those we have lost. Despite the challenges of living with ME, each piece in this exhibition is a testament to the strength, talent, and hope that shines through even in the darkest moments.

We hope this art exhibition fosters empathy, deepens awareness, and strengthens the call for recognition, policy, research, and compassionate care for all affected by Severe ME.




The time to see, hear, and act for those with Severe ME is now.





There are a few ways to view the Online Art Exhibition, see your choices below.



1. Slideshow


View a Slideshow Presentation of the exhibition and manage the viewing yourself.



Tips

(i) You will find yourself on the Canva app to view the art exhibition.
You may need to click on the ‘Present’ button at the top right of the screen.
Then click on ‘Present Full Screen’ and then ‘Present’.
You can move to the next slide by clicking on the arrow to the right (>) and if you want to go back you click on the arrow facing left (<)

(ii) If watching on a small device like a mobile phone viewing may be better with the device placed on its side.

(iii) There is no sound except for the sound in two videos included in the exhibition.

(iv) Please click twice on the red play button (YouTube Videos) on slide 101 and slide 183






2. Video


Please see our online art exhibition via YouTube Video (approx. 55 mins long).
All you need to do is press play or pause as you wish.


Tips

Please be warned of a noisy advertisement that may load before the video on YouTube; you may wish to turn the sound off. There is no sound to accompany this format of the exhibition.





3. Exhibition via PDF Document


You can view the exhibition entries via Document in your own time.








The collaborative process required to produce an online art exhibition like this one involved a team of incredibly supportive and generous individuals working with us to create and present a cohesive and engaging exhibition to raise awareness about Severe ME, to witness and remember on Severe ME Day. A heartfelt thank you to each and everyone who supported our online art exhibition and shared their incredible artwork; it wouldn’t have been possible without you!







______________________________________________________________________________________________________




Online Art Exhibition, ME Awareness Day, May 12th 2025








Bring ME Out of the Shadows is an online art exhibition which was created to mark ME Awareness Day on May 12th, 2025.

Members of the global ME (Myalgic Encephalomyelitis) community were invited to share their creativity, perspectives, and personal experiences through art for our May exhibition.

This exhibition brings together voices too often unseen or unheard, offering a powerful glimpse into life with ME. Through a diverse collection of works, Bring ME Out of the Shadows aims to raise awareness, foster connection, and celebrate resilience.

Please see our Bring ME Out of the Shadows online art exhibition published in May 2025 to mark ME Awareness Month. Together, these artworks form a powerful call for visibility, understanding, and change, bringing ME out of the shadows and into the light. There are two formats available below.




1. Art Exhibition Slideshow

Tips

(i) You will find yourself on the Canva app to view the art exhibition by slideshow.
You may need to click on the ‘Present’ button at the top right of the screen.
Then click on ‘Present Full Screen’ and then ‘Present’.

You can move to the next slide by clicking on the arrow to the right (>) and if you want to go back you click on the arrow facing left (<)

(ii) If watching on a small device like a mobile phone viewing may be better with the device placed on its side.

(iii) There is no sound.


Link to slideshow here





2. Art Exhibition Video



Tip
Please be warned of a noisy advertisement that may load before the video comes up on YouTube; you may wish to turn the sound off. There is sound to accompany this format of the exhibition.



May Art Exhibition Video: (approx. 50 mins)












Monday, 30 June 2025

Submission to the Public Consultation: Successor to the Roadmap for Social Inclusion 2020–2025

 













We welcomed the opportunity to contribute to the development of Ireland’s next national social inclusion strategy, due to commence in 2026. (deadline for submission is today, June 30th)

As outlined in the consultation process, the ambition to reduce consistent poverty to 2% or less and to make Ireland one of the most socially inclusive countries in the EU is both essential and urgent. However, for too many people, particularly those with disabilities and chronic illness, this ambition remains out of reach due to persistent structural and policy barriers.


Our submission is grounded in the lived experiences of individuals within the ME community in Ireland.

Over the past 12 months in particular, many members of our community have come forward to share their personal experiences, challenges, and concerns, especially in relation to financial hardship, housing, securing and maintaining a ‘home’, transport and accessibility, home care supports, Disability Services, access to education, and a range of other critical issues.

We are grateful to those who have spoken up, not only on their own behalf but also for those who face similar struggles yet remain unheard.

We have listened carefully and respectfully to these voices, and based on their feedback, we presented a set of key recommendations in our submission. These are organised across the following areas:


1. Disability and Poverty

• Tackle the significantly higher At Risk of Poverty or Social Exclusion (AROPE) rate among disabled people

• Reform Disability Allowance eligibility to be based on disability rather than means

• Introduce additional supports to address the extra costs of living with a disability

• And more


2. Health & Social Care Access

• Reform medical card eligibility to reflect medical need rather than means

• Improve access to disability services and specialist care for people with a disability including those with ME

• And more


3. Housing

• Address the housing crisis with an emphasis on the needs of disabled people

• Ensure the availability of appropriate, accessible, and safe housing

• Improve access to grants and supports for home adaptations

• And more


4. Energy Poverty

• Address rising energy costs and their disproportionate impact on disabled people

• Extend the Fuel Allowance season to protect health and wellbeing

• Increase the Fuel Allowance to reflect the actual cost of living

• And more


5. Care Systems
• Address the crisis across Home Care Supports and Nursing Homes
• And more



We believe that a future roadmap must embed disability rights, economic justice, and universal design at its core to ensure no one is left behind.














Disability should not be a poverty sentence

#LeaveNoOneBehind










Our Previous Submissions


The ME Community's Open Letter to the HSE CCO May 2024


Green Paper on Disability Reform Submission November 2023


Pre-Budget 2024 Submission September 2023


Joint Committee on Disability Matters Submission November 2020