Survey for Carers of People with ME (Ireland only) Now Closed

       

ME Carers Survey – now closed

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

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• Outdated biomedical Models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• Outdated or harmful guidelines/criteria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. 

Dental Treatment

 

Introduction

People living with Myalgic Encephalomyelitis (ME), particularly those with severe or very severe disease, can face profound and often underestimated barriers to accessing dental care. These issues arise from the underlying neurological, sensory, and systemic dysfunction that defines the disease.

Energy limitation is a central feature of ME. Patients often have almost no usable energy, and attending an appointment - travel, interaction, sensory exposure - can lead to Post-Exertional Neuro-Immune Exhaustion (PENE, also referred to as PEM), a worsening of all symptoms that can last days, weeks, or longer. This means that even a short dental visit may result in significant and prolonged deterioration.

For some individuals, those in the more severe ranges, for example, even the presence of another person in the same room can be overwhelming. 

Physical contact, which is unavoidable in dentistry, may be intolerable due to hyperesthesia and touch sensitivity, where even light contact can trigger severe pain or distress. This is compounded by pressure intolerance, meaning the dental chair, headrest, or even routine positioning can become a source of significant suffering.

The dental environment itself can be unmanageable. Bright overhead lights may worsen light sensitivity and headaches, while the sound of instruments can provoke extreme noise sensitivity. 

Many living with ME experience confusion, disorientation, and cognitive dysfunction, making it difficult to process instructions, give consent, or communicate needs effectively. These are not mild impairments; they can fluctuate rapidly and worsen with exertion.

Basic aspects of dental treatment may also be physically impossible for some individual:

Chewing and swallowing difficulties, along with gagging or problems managing secretions, can make procedures unsafe without careful adaptation. 

Muscle weakness, fatigue, spasms, or even periodic paralysis can limit a patient’s ability to keep their mouth open or remain in position. 

Breathlessness may be exacerbated when reclined, and movement or motion sensitivity can make even small adjustments intolerable.

Additional barriers include chemical sensitivities, where exposure to perfumes, cleaning agents, or dental materials may trigger severe reactions. 

Sleep disruption further reduces resilience, and cumulative symptom burden means that what might seem like small stressors can become overwhelming when combined.

 

Precautions

Ultimately, people with ME are patients whose condition demands a different standard of care. Recognising the realities of severe ME is the first step toward making dental treatment safe, humane, and accessible. Because of all the above, appropriate dental care for people with ME, especially severe ME, requires knowledgeable, flexible, and patient-centred approaches. 

This may include:

• Careful risk assessment before any intervention

• Minimising sensory input (dim lighting, quiet environment)

• Avoiding unnecessary physical contact and explaining each step in advance

• Allowing extra time, rest breaks, or even splitting treatment into shorter visits

• Considering alternative locations, including domiciliary (home-based) care or seeing the individual when admitted to hospital for another reason

• Awareness of sensitivities when selecting materials, medications, or anaesthetics

• Close collaboration with carers, who often understand the patient’s needs best

For some, conventional dental attendance may simply not be feasible. In these cases, access to specialist or community-based services is essential to prevent neglect of oral health.

Dental Leaflet 

 

We are sharing a useful leaflet by the Grace Charity for ME.

Please see information for ME sufferers and their dentists in their leaflet which can be printed on both sides, then folded into thirds, with the tooth image to the front.

Dental Leaflet by Grace Charity for ME  

Tips:  print landscape; both sides of paper; PDF may need you to ‘shrink to fit’.

(The leaflet was produced by The Grace Charity for M.E. with grateful thanks to members of the 25% ME Group)

 

 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.