Public Consultation to Inform the Review of the Disability Act 2005

   

The Disability Act 2005 is under review.

The Irish Government is inviting people in Ireland to share their experience as a person living with a disability. The consultation is a chance for people to share their views on the Disability Act. The Government would like to hear from people with lived experience, experts and others with an interest in the Act. They would like to hear from disabled people, their families and carers. They would like to hear from groups that speak for disabled people and from Disabled Persons Organisations.

The act, which hasn't been updated for over 20 years, is a wide-ranging piece of legislation covering areas like definition of disability, assessment of needs, accessible buildings, employment, and more.

Ways to send your submission

A submission is when you send your views and ideas to a person or organisation. There are different ways to send your submission:

• There is an online form that you can use for your submission. Attach it to an email and send it to: disabilityactreview@dcde.gov.ie

• Attach it to an email and send it to: disabilityactreview@dcde.gov.ie

• You can send an audio or video recording. Attach it to an email and send it to: disabilityactreview@dcde.gov.ie

• You can make a video submission in Irish Sign Language.

• You can post your submissions to:
  

The Disability Equality Policy Unit,

Department of Children,

Disability and Equality,

Block 1, Miesian Plaza,

50-58 Baggot Street,

Dublin 2, D02 XW14,

Freepost F5055

Closing date for submissions is 5pm on 9th September 2026.

More information via the Government link here

The review of the Disability Act 2005 presents an opportunity to modernise Ireland's disability legislation and bring it into closer alignment with the UNCRPD.
For people living with ME, reform is needed to ensure that the law recognises the realities of fluctuating disability, removes barriers to participation, and protects the right to live with dignity, autonomy, and equal opportunities.



In their overview of the review of the Disability Act, the Government stated that the process will involve a detailed consideration of the reforms necessary to advance the implementation of the UNCRPD.



ME Advocates Ireland (MEAI) will make our own submission focusing on how the Disability Act aligns with the UNCRPD, highlighting the reforms we believe are necessary to better recognise and support people with ME associated disabilities and their carers.

Please see the Easy Read Guidance linked here

Survey for Carers of People with ME (Ireland only)

       

ME Carers Survey – now open

Our short survey for family carers of people with ME in Ireland is now open.

We are asking carers to share their experiences of caring, the impact it has had on their lives, and the supports they feel are most needed.

Anonymous

5-10 minutes to complete

Open to family carers of people with ME in Ireland

If you are a carer, your input would be greatly appreciated, and sharing the link to the survey also helps us reach others who may wish to take part.

Thank you for supporting this work.

Take part here

Or via link

https://www.surveymonkey.com/r/K7CLYJN

#NationalCarersWeek

#FamilyCarers

#MyalgicEncephalomyelitis

Systemic and Conceptual Issues in ME Diagnosis and Management

 

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1. Conceptual Issues

• Outdated biomedical Models
• Emphasis on psychological causes
• Misunderstanding of pathophysiology
• Minimisation of severity and disability

2.Diagnostic Barriers

• No definitive biomarker
• Complex, multisystem presentation
• Overlap with other conditions
• Inconsistent criteria and guidance
• Limited clinician education

3. Healthcare System Failures

• Lack of specialist services
• Short consultations
• Dismissal and disbelief
• Poor continuity of care
• Limited treatment options

4. Research Gaps and Underfunding

• Chronic underinvestment
• Focus on contested therapies
• Lack of prioritisation in research agendas
• Slow translation of biomedical research

5. Policy and Guideline Problems

• Outdated or harmful guidelines/criteria
• Lack of alignment with scientific evidence
• Poor Implementation
• Lack of patient input in policy decisions

6. Societal and Cultural Factors

• Stigma and misunderstanding
• Gender bias and discrimination
• "Not visible, not real" mentality
• Blame and moral judgment

"ME is not just a medical issue - it is a systemic issue. The problem is not the patient, it is the system."

The diagnosis and management of Myalgic Encephalomyelitis (M.E.) has been shaped by a range of systemic factors, including historical differences in case definitions, variability in clinical training, and the availability of specialist services. In particular, the condition has at times been conceptualised within parts of the medical and research literature through predominantly psychosomatic or psychologising frameworks, which has contributed to longstanding debate about its underlying nature.

Together, these factors have contributed to inconsistency in diagnosis, variation in clinical understanding, and unequal access to appropriate care and support.

Patients frequently report additional challenges relating to how their symptoms are received and understood within healthcare settings. These include experiences of not being believed, or of symptoms being attributed primarily to psychological causes, even in the presence of significant physical impairment. While experiences vary between clinicians and services, such reports highlight the importance of improving awareness, communication, and clinical understanding of M.E.

In the absence of standardised diagnostic pathways and widely available specialist services, the experience of people with M.E. can differ significantly depending on location and the knowledge of individual healthcare professionals. This section outlines key structural and cultural issues that have influenced how M.E. is recognised, diagnosed, and managed within the healthcare system.

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Consequences of Systemic Failures

• Delayed Diagnosis and Care - average delay of 5+ years in many countries
• Worsening Health and Disability - Loss of function, crash-burn cycle, reduced quality of life
• Psychological Impact - Anxiety, depression, trauma from invalidation and neglect
• Socioeconomic Costs - Loss of education, employment, income and increased healthcare and welfare costs
• Loss of Trust - in healthcare, institutions and society

      Systemic inaction perpetuates suffering.

The following posts summarise key systemic issues in the diagnosis and management of M.E.

The Diagnostic Criteria Soup

Understanding Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)

Mistreatment of ME - a Medical Scandal

Diagnostic Overshadowing

Case Definition Quagmire

Research Gaps and Underfunding

The Current Situation in Ireland re Myalgic Encephalomyelitis (ME)

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What Needs to Change

1. Update the Evidence Base - invest in high-quality biomedical research and acknowledge the complexity of ME

2. Educate and Empower Clinicians - Improve medical education and training across all health disciplines

3. Improve Access to Specialist Care - Develop ME services, multidisciplinary and patient-centred care pathways

4. Reform Guidelines and Policy - Align guidelines with current evidence and prioritise safety, dignity and support

5. Incude Patient Voices - Meaningful patient involvement in reserach, policy and service design

6. Tackle Stigma and Promote Awareness - Public education to foster understanding, compassion and inclusion

A better future is possible - with accurate understanding, evidence-based care, and systemic change, people with ME can be believed, supported, and their lives restored. Change the system. Changes lives.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

Cost of Disability Consultation

 

We’re pleased to share that the ME Advocates Ireland (MEAI) Cost of Disability Submission has now been completed and submitted to the Department of Social Protection.

We want to sincerely thank every person who has shared their experiences with us over the past few years, especially those who reached out recently. Your emails and private messages have been vital in helping us highlight the real financial challenges faced every day by people living with ME-related disabilities.

This submission reflects voices from across Ireland, bringing together the lived experiences of our community.

We hope this consultation process leads to the development of a fair, inclusive, and needs-led Cost of Disability payment.

Deadline: April 7th at 5pm

https://drive.google.com/file/d/12n75Dt8dW-LfEq1YJggcPrGY3p5zw0-F/view?usp=sharing

Our Previous Submissions

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

Green Paper on Disability Reform Submission November 2023

Pre-Budget 2024 Submission September 2023

Joint Committee on Disability Matters Submission November 2020

Severe ME: Resources for Patients, Carers, and Advocates to Navigate Care Settings

 

These resources are for people with Severe or Very Severe ME, their carers, families, and advocates. They are especially useful in hospital or care settings where there is little understanding of severe ME, or where a patient’s needs may be overlooked or denied. 

The resources provide guidance for talking with health and social care professionals and help ensure the challenges and needs of those affected are recognized.

Severe ME: Tools for patients, carers and advocates to navigate care settings

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

Risk Assessment in Severe ME

 

 

For people with severe or very severe ME, a medical risk assessment is essential before any interaction or care planning. Assessment itself carries a significant risk of harm, including prolonged deterioration, and must be carefully planned and adapted to the individual’s limitations and sensitivities. Interaction itself can cause deterioration and loss of capacity to engage. All decisions should be guided by a clear evaluation of risk versus benefit, with appropriate adjustments to minimise harm and ensure accurate, person-centred care.

Please see our Risk Assessment document linked below

Risk Assessment

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance. 

Severe ME: Guidance for Professionals in Care Settings

 

Our linked guidance, Supporting People with Severe ME in Hospital or Other Healthcare Setting, was developed to support people with Severe or very Severe ME, as well as their carers and family members, in advocating for their needs in care settings. 

The document was created for health and social care professionals, and anyone who may meet someone with Severe/Very Severe ME, to guide them in the provision of appropriate and informed care.

Dear Health/Social Care Professional,

The purpose of this guidance document is to provide you with the information required to manage the reasonable adjustments essential in the planning and care of individuals with Severe or Very Severe Myalgic Encephalomyelitis (ME) -  to facilitate the plan for:

• their transportation and admission to hospital or other care setting
• their pre-care assessment and their care while in hospital
• their planned hospital discharge 
• their care that follows

Supporting people with Severe ME in a Hospital or Other Care Setting

The PDF version of this document allows easy access to the content from the contents page. If you wish to have the PDF version please get in touch via email to:  info@meadvocatesireland.com

The linked guidance is a living document - we are continuously learning as we receive feedback from the ME community and others; we plan to update the document as we learn more. Recent update in April 2026.

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance.