Supporting People with Severe ME in Hospital Document

  

Our linked information pack, 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 hospital settings. 

The document  was also created for health and social care professionals, and anyone who may encounter someone with Severe ME, to guide them in providing appropriate and informed care.

Dear Health/Social Care Professional,

The purpose of this document pack is to provide you with the information you require to

manage the reasonable adjustments essential in the care and management of

individuals with Severe Myalgic Encephalomyelitis (ME) to facilitate the plan for their

care while in hospital, and the plan for their hospital discharge and the care that

follows.

Supporting People with Severe ME in Hospital or other Healthcare 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

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 currently working on our own Dental Leaflet to include risk assessment details and more.

Until we have completed our leaflet we are sharing a 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)

 

Guide to Emergency and Social Housing

   

 

Guide to Emergency 

and 

Social Housing
 

This guide provides practical advice for people living with Myalgic Encephalomyelitis (ME) who are navigating emergency accommodation, social housing, and medical priority applications in Ireland. It draws on lived experience, healthcare guidance, and housing procedures. While the guide is relevant to people with ME across all levels of severity, particular emphasis is placed on severe ME, where housing and care needs can be especially complex and often overlooked.

Emergency Housing

Emergency accommodation is temporary housing arranged by local authorities under the Housing Act 1988.

A local authority may provide emergency accommodation if:

·        you have no accommodation you can reasonably stay in, and

·        you cannot secure accommodation yourself.

You do not need to be on the social housing list to be assessed for emergency accommodation.

Typical emergency accommodation includes:

·        hotels

·        hostels

·        B&Bs

·        family hubs

·        occasionally short-term apartments.

It is intended to be short-term while the local authority works with you to find longer-term housing.

 

What happens once someone enters emergency accommodation

When someone is assessed as homeless or placed in emergency accommodation the local authority must engage with them through homelessness services and work toward longer-term housing options. Usually the local authority will:

·        assign a housing officer or key worker

·        assess your long-term housing needs

·        help you apply for:

-            social housing

-            HAP

-            other housing options.

Emergency accommodation varies a lot. In practice it can vary widely, including:

•             shared rooms

•             communal bathrooms

•             noisy environments

•             frequent moves between locations.

Because of this, people with severe sensory sensitivities or mobility difficulties may experience significant challenges, particularly when combined with severe ME symptoms.

 

 

About Severe ME

Severe ME is a complex, multi-system condition that can result in significant and long-term impairment to health and quality of life. People with severe ME often have very limited physical and cognitive capacity, with symptoms such as profound exhaustion, extremely low energy levels, and heightened sensitivity to sensory stimuli.

 Emergency accommodation can significantly worsen symptoms due to:

·        Noise, light, and sensory overload

·        Shared facilities and lack of privacy

·        Frequent relocations or unstable environments

·        Physical barriers such as stairs or narrow corridors

 

Medical documentation from a GP or consultant can explain:

·        How unstable or shared environments affect your health

·        Your need for a quiet, private, low-stimulus environment

·        Specific requirements such as ground-floor or accessible accommodation

·        The risk of relapse or long-term deterioration if exposed to unsuitable environments

 

 

Risk Assessment for Emergency Accommodation

Myalgic Encephalomyelitis (ME) is a complex, multi-system condition that can lead to significant and long-term impairment in health and quality of life. People with Severe ME are particularly vulnerable to environmental stress and physical exertion.

Precautions

·        Provide medical documentation (GP or consultant letter) explaining your diagnosis, sensitivities, and potential harm from unsuitable accommodation.

·        Request private rooms, en-suite bathrooms, or ground-floor accommodation where possible. Explain why shared or communal spaces may worsen your condition.

·        Document mobility aids (wheelchair, walking frame) and storage/charging requirements.

·        Minimize stress and exertion during relocation or assessment visits. If a move is required, plan carefully to reduce travel or physical strain.

·        Communicate your medical needs clearly to staff in advance. Ensure they understand risks of fatigue, relapse, and environmental sensitivities.

 

Why this matters

Without careful planning, emergency accommodation can trigger severe relapses, prolonged worsening of symptoms, or even permanent deterioration. Early medical documentation and risk assessment can help housing officers make appropriate placement decisions, potentially avoiding environments that are medically harmful.

If a person has significant medical needs, healthcare professionals can explain:

·        diagnosis (e.g., severe ME)

·        environmental sensitivities (noise, light, etc)

·        need for a stable and low-stimulus environment

·        mobility limitations

·        need for private accessible accommodation

·        risks of relapse or deterioration.

 

This may help housing officers understand that standard emergency accommodation may not be appropriate. Medical evidence can sometimes influence placement, for example:

·        avoiding shared dormitory-style accommodation

·        requesting a private room

·        requesting an en-suite bathroom

·        requesting ground-floor or accessible accommodation

·        requesting a quieter environment where possible.

This isn’t guaranteed (because availability is limited), but clear medical documentation can help housing officers justify different arrangements.

 

 

Important Notes for local authority/housing providers or key workers

The following notes can be copied as a stand-alone document and emailed, posted, or given to local authority housing providers or key workers. While much of this risk assessment guidance refers to severe ME, it can be adapted to reflect your own circumstances, including the specific health needs you experience and the severity of your ME. The document can be edited to describe your individual needs, the impact of your condition, and any particular housing requirements.

 

 

International Women's Day March 8th 2026

 

 

On International Women’s Day, we stand with the millions of women living with Myalgic Encephalomyelitis (ME).

Affecting mostly women, ME has too often been dismissed, misunderstood, or minimized within healthcare systems.

For decades, patients were told their debilitating symptoms were psychological rather than biological, leaving many without diagnosis, treatment, or support.

True gender equality must include equity in healthcare - believing women, investing in research, and ensuring that conditions like ME are taken seriously.

When illnesses that affect mostly women are ignored, equality in healthcare remains unfinished. The voices of women with ME matter, and their fight for recognition is part of the broader struggle for women’s rights and dignity worldwide.

This year International Women's Day is celebrating its 115th anniversary. That’s 115 years of advocating for equality and rights for females in this world. Women, including women with ME, deserve to be seen, heard, and supported.

Key Statistics About ME and Women

• An estimated 17 - 30 million people worldwide live with ME.

• Around 70 - 80% of people with ME are women.

• ME disproportionately affects women but has historically been misunderstood, dismissed or underfunded partly because of gender bias in medicine.

• For decades, many patients, especially women, were told their symptoms were “psychological,” “stress,” or “hysteria.”

• Many patients wait years before receiving a diagnosis.

• ME can be as disabling as conditions like Multiple Sclerosis or Congestive Heart Failure in severe cases.

• The illness has historically received far less research funding than diseases with similar levels of disability. Funding for ME research remains far lower than for illnesses with similar disability levels.

#InternationalWomensDay #ME #WomensHealth #IWD