Severe ME Day

Press Release – ANZMES Demands Urgent Action on Severe ME Day, Highlighting “Systemic Neglect” of Thousands Bedridden in NZ

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FOR IMMEDIATE RELEASE

On Severe ME Day, the Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is issuing an urgent call for government action to address the systemic neglect of New Zealanders living with Severe and Very Severe Myalgic Encephalomyelitis (ME).  ANZMES highlights that an estimated 25% of the 65,000 Kiwis with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)  – over 16,000 people – are housebound or completely bedridden, many requiring 24/7 care simply to survive.

Severe ME is a devastating, multi-systemic neurological illness that can leave individuals unable to tolerate light, sound, or touch. It can rob them of the ability to speak, eat, or perform any basic self-care. Despite the severity and scale of the crisis, these individuals remain largely invisible, trapped within their homes and failed by a healthcare system ill-equipped to meet their needs.

Fiona Charlton, ANZMES president states “Their suffering is compounded by a healthcare system that lacks the necessary expertise and facilities. On Severe ME Day, we are not just asking for awareness, we are demanding tangible commitments from MPs to provide safe, compassionate, and evidence-based care. Inaction is no longer an option.”

ANZMES is calling on policymakers to address this crisis by actioning specific, urgent changes:

  • Fund Dedicated Care: Establish funding for dedicated ME/CFS respite and long-term residential care facilities staffed by healthcare professionals trained by ANZMES in the specific needs of severe ME patients.
  • Mandate Education: Implement mandated ME/CFS education for all healthcare professionals to ensure safe, evidence-based practice and prevent the harm caused by inappropriate advice like Graded Exercise Therapy (GET).
  • Update Disability Policy: Formally include ME/CFS in all national disability support policies and frameworks, as recommended by the United Nations, to ensure access to essential support.
    • United Nations Committee on the Rights of Persons with Disabilities (CRPD. In its 2022 review, the Committee made a recommendation that the New Zealand government should: “Expressly include ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) in disability policy and practice, to ensure access for persons with ME/CFS to health care and disability services”.

As part of the campaign, ANZMES is running an InMEmory Tribute to honour the individuals who have been lost to ME/CFS and to acknowledge those currently living in profound isolation. 

“Every name and country in our tribute represents a life devastated by this illness and a family left to navigate a broken system,” said ANZMES President. “Their lived stories are the reason we fight for a future where no one is left to suffer in silence.”

ANZMES urges the public, healthcare professionals, and policymakers to visit its website Severe ME Day 2025 to access critical resources and learn how they can support the urgent call for action. 

Understanding ME/CFS and long COVID
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, cardiovascular, and immune systems. It is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance (to list a few). With over 100-200+ potential symptoms, the condition’s impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe (housebound) and 25% as very severe (bedbound).

Long COVID (LC) is characterised by persistent, unexplained symptoms following infection with COVID-19 (SARS-CoV-2) lasting more than 12 weeks and not explained by an alternative diagnosis. Both conditions share symptoms such as extreme fatigue, cognitive dysfunction, and post-exertional symptom exacerbation (PESE), with up to 50% of long COVID cases fitting the diagnostic criteria for ME/CFS.

COVID developing to ME/CFS

Using data from a long COVID research initiative run by the US National Institutes of Health (NIH), the incidence of ME/CFS is now considered 15 times higher than pre-pandemic levels, and that people with a history of COVID are almost eight times as likely to develop the chronic condition. 

Post-Exertional Malaise (PEM) 

Post-Exertional Malaise (PEM), also referred to as post-exertional symptom exacerbation (PESE) in the context of long COVID, is a debilitating response to normal, every-day activities in people with ME/CFS. For individuals with severe-very severe ME/CFS or LC, this can be triggered by sensory overload, such as exposure to light or even simple conversations. Repeated episodes of PEM can exacerbate these already severe symptoms, and even minimal exertion can lead to significant setbacks for the patient’s health and wellbeing.

About ANZMES
The Associated New Zealand ME Society is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation’s expertise comes from its reputable medical team of advisors, which includes a world renowned expert and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a network of academic researchers, clinicians, and representatives from the ME community.

The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS, long COVID, and associated conditions.

ANZMES is a founding member of the World ME Alliance, and a member of the Neurological Alliance NZ,  NZ Carers Alliance, long COVID Alliance, Disabled Persons Assembly NZ (DPA), and Access Matters. ANZMES is affiliated with: Aotearoa COVID Action, and Ehlers-Danlos Syndromes Aotearoa New Zealand.

The organisation’s vision is to live in a world where Myalgic Encephalomyelitis (ME)/ Chronic Fatigue Syndrome (CFS), long COVID (and associated conditions) are recognised, supported, diagnosed early, treated effectively, and cured.

The vision focuses the organisation’s mission as the trusted leader to fund and generate robust Aotearoa research, represent the global voice, and educate through best practice to improve outcomes.

The vision and mission drive the organisation’s purpose as the leading National Advisory to produce and deliver quality, reputable, authoritative, evidence-based information, data, research, and education. We represent the needs of the community to ensure best outcomes are the primary focus of healthcare, legislation, and services that affect people living with ME, long COVID, fibromyalgia, and dysautonomia.

PRESS RELEASE – ANZMES Releases Essential Resource for Healthcare Professionals to Manage Hospital Stays of Severe ME/CFS and long COVID Patients

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ANZMES (the National Advisory on ME/CFS and a RNZCGP registered provider of continuing education) has released a short reference guide for secondary care. The resource acts as a guide for healthcare professionals in managing hospital stays for patients suffering from severe-very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID (lC). It aims to improve patient care by addressing the unique needs and symptoms of patients with severe ME/CFS and lC during their hospital admissions.

“ME/CFS is a complex condition and its severity is often misunderstood by healthcare professionals. Severe patients are housebound. Very severe patients are bedbound, with very high needs requiring 24/7 care. Hospitalisation often occurs due to undernutrition, infections, and dysautonomic issues. Therefore, it is crucial that healthcare professionals have the knowledge to effectively manage patients during hospital admissions so as not to exacerbate their severe and debilitating symptoms,” says ANZMES president, Fiona Charlton.

“Our aim with this new resource is to provide a clear and concise reference guide for healthcare professionals to enhance patient care. While the assessment and evaluation of long COVID may differ from ME/CFS, the management of long COVID closely mirrors it, so we have leveraged our medical team’s expertise to develop a guide to support the effective care of these patients in a hospital setting.” She says.

The resource outlines essential strategies for managing severe symptoms, including intense muscle and joint pain, extreme sensitivity to light, sound, touch, and chemicals, impaired mobility often necessitating a wheelchair, severe gastrointestinal issues, and increased susceptibility to infections due to immune dysfunction.

“For very severe patients, a light touch of the arm can be interpreted by the body as pain. Bright light can cause post-exertional malaise. People with very severe ME/CFS and long COVID spend the majority of their lives in darkened rooms, wearing noise cancelling headphones and eye masks. They are unable to eat properly, or bathe and toilet themselves without full time carers, and it is often a family member who assumes this role.” The impact of this on everyone cannot be underestimated.

An overview of key recommendations include:

  • Sensory Adjustments: Dim lighting, minimise noise, and provide private rooms to reduce sensory stress.
  • Medication and Nutrition: Avoid histamine-releasing anaesthetics and muscle relaxants. Use medications like propofol, midazolam, and fentanyl with caution. Monitor hydration and consider IV saline for orthostatic intolerance.[1]
  • Activity and Rest: Recognise that even minimal interactions, such as being spoken to or exposure to light, can trigger PEM. Prioritise rest and avoid any unnecessary activity.
  • Communication and Cognitive Support: Involve family and caregivers as representatives, especially when the patient cannot communicate; or simplify communication by providing written instructions and allowing extra time for patients to process information.
  • Care and Support: Recognise the psychological impact, validate the severity of conditions, and provide access to counselling and mental health support. Include family members or caregivers in discussions and allow them to stay with the patient if requested.

ANZMES emphasises the importance of personalised care plans, the involvement of patient’s family members and their regular health team to understand the severity of their condition. The guide also encourages connections with local support groups and resources for additional advocacy and support for not only patients, but also their carers to avoid burnout. Remote consultations and home visits are recommended to avoid unnecessary hospital admissions.

ANZMES president, Fiona Charlton concludes “We believe that education is key to improving outcomes for patients with severe-very severe ME/CFS and long COVID. By providing this resource, we aim to enhance the knowledge and confidence of healthcare professionals so they are equipped when these patients are admitted under their care.”

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Understanding ME/CFS and long COVID:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term, multi-systemic illness affecting the nervous, endocrine, autonomic, and immune systems. Patients experience severe fatigue, post-exertional malaise (PEM), unrefreshing sleep, cognitive impairment, and orthostatic intolerance. With over 100-200+ potential symptoms, the condition’s impact can vary greatly, making diagnosis and management highly individualised. Roughly 25% of all ME/CFS cases are categorised as mild, 50% as moderate-severe and 25% as very severe.[2] [3]

Long COVID is characterised by persistent, unexplained symptoms following infection with COVID-19 (SARS-CoV-2) lasting more than 12 weeks and not explained by an alternative diagnosis. Both conditions share symptoms such as extreme fatigue, cognitive dysfunction, and post-exertional symptom exacerbation (PESE), with up to 50% of long COVID cases fitting the diagnostic criteria for ME/CFS.

Post-Exertional Malaise (PEM)

Post-Exertional Malaise (PEM), also referred to as post-exertional symptom exacerbation (PESE) in the context of long COVID, is a debilitating response to normal, every-day activities in people with ME/CFS. For individuals with severe-very severe ME/CFS or lC, this can be triggered by sensory overload, such as exposure to light or even simple conversations. Repeated episodes of PEM can exacerbate these already severe symptoms, and even minimal exertion can lead to significant setbacks for the patient’s health and wellbeing.

About ANZMES

ANZMES, the Associated New Zealand ME Society, is the National Advisory on ME/CFS. Established in 1980, ANZMES has been at the forefront of research, representation, and education for ME/CFS in Aotearoa/New Zealand. The organisation is a registered provider of continuing medical education with the Royal New Zealand College of General Practitioners (RNZCGP) and is dedicated to improving the lives of those affected by ME/CFS and long COVID. ANZMES is a founding member of the World ME Alliance.

[1] Lapp (n.d.). Advice for Persons with ME/CFS Anticipating Anesthesia or Surgery. Hunter-Hopkins Center, PLLC. Retrieved from: https://drlapp.com/resources/advice-for-pwcs-anticipating-anesthesia-or-surgery/

[2] C-J Chang, et.al., (2021). A Comprehensive Examination of Severely Ill ME/CFS Patients Healthcare (Basel). 2021 Oct; 9(10): 1290. Published online 2021 Sep 29. doi: 10.3390/healthcare9101290

[3] S.L. Grach, et.al., (2023). Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. CONCISE REVIEW FOR CLINICIANS| VOLUME 98, ISSUE 10, P1544-1551. https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext

Severe ME Day 2024 -Safer Hospital Care for Severe ME

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Credit to the World ME Alliance for this content.

Severe ME Day, held on the 8th of August each year, is a significant occasion for the World ME Alliance and the global community affected by Myalgic Encephalomyelitis (ME). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in darkened rooms. The hashtag #SevereMEDay is used to amplify the voices of those with Severe and Very Severe ME, as well as honour those who have tragically lost their lives to this debilitating condition.

ME is a neurological disease with widespread dysfunction of the immune system and impaired cellular energy capacity. Severe ME has been described as a ‘living death’ because of the level of disability and suffering it causes. Severe ME patients are as ill as AIDS patients in the final weeks of life, but can survive in this state for years or decades.

The grave dangers people with Severe ME are exposed to in hospital were underlined at the recent coroner’s inquest in the UK for Maeve Boothby O’Neill. Maeve, a 27 year old woman with Severe ME and resultant malnourishment, died in Oct 2021 following 3 hospital admissions where denial of emergency nutritional care led to her terminal decline.

Current Challenges in Hospital Settings

People with Severe ME experience constant, crushing fatigue and unrelenting pain plus extreme sensitivity to stimuli such as noise and light, leaving them housebound or bedbound. All of these are exacerbated by the hallmark symptom of ME: post-exertional malaise (PEM). PEM is an acute worsening of symptoms after even minimal physical, mental, or emotional exertion. For Severe ME patients, even sensory overload (light, sound, smell, touch) can induce painful and disabling PEM that may last days, weeks, or permanently. Very Severe patients may experience periods of paralysis and are completely reliant on caregivers.

Leaving the house is such a dangerous prospect for people with Severe ME, that they will only consider going to hospital in a dire emergency. Just travelling in a car and interacting at reception could have neurological impacts that trigger a huge reduction in their quality of life for months to follow. A hospital admission is a huge risk and needs to be acknowledged as such by health authorities.

Unfortunately, most individuals with Severe ME report poor experiences in hospital settings. Stigma and misunderstanding, environmental sensitivities and inadequate care too often result in dramatically increased suffering. 

Safer Hospital Care for People with Severe ME

Best practices to prevent exacerbating PEM and causing unnecessary harm:

  1. LISTEN to ME: Listen to people with ME and their carers with lived experience of symptom management. Develop personalised care plans with family members that respect their knowledge of the patient’s unique needs. Do not ignore their requests to protect the patient from PEM. Take advice from ME specialists.
  2. Educate healthcare staff: Provide comprehensive training to healthcare professionals on ME, particularly the severe form of the condition, and common comorbidities. Discredited treatments CBT and GET are inappropriate for Severe patients and may cause deterioration.
  3. Allow advocates: Allow a family member or carer to stay at all times if requested by the patient. Obtain consent from the outset to have a family member or advocacy worker to speak on their behalf.
  4. Safeguard rest: Undisturbed sleep is vital to prevent decline. Respect the patient’s need for strict pacing of activities to survive hospital admission and prevent adrenaline surges. Eliminate all non-essential interaction, move slowly and quietly around the patient.
  5. Ensure a low-stimulus environment: Allocate private rooms that are soundproofed and dimly lit. Minimise chemical or fragrance smells, sensory overload and physical contact. Work with carers to establish sustainable temperature levels and access times.
  6. Support nutritional care: Recognise that people with Severe ME have acute food intolerances and may not have enough energy to swallow or digest. Allow special diet foods, flexible meal times and adjusted feeding positions. Initiate IV hydration, oral nutrition support, enteral tube feeding or parenteral nutrition where appropriate. 
  7. Enable medication management: Most people with ME have extreme sensitivities and potential adverse reactions to drugs. Start medications one at a time and taper up slowly from a fraction of normal dose to avoid harm. 
  8. Respect reasonable adjustments: People with Severe ME need dark glasses, headphones or earplugs and eye-masks. They usually have orthostatic intolerance and need to lie flat at all times. Many are hypermobile and hypersensitive to touch and simple movement may cause pain for weeks afterwards. Be guided by caregivers.
  9. Prioritise communication: It is vital to provide clear and compassionate communication with cognitively compromised patients and their families and involve them in decision-making processes. If patients can tolerate conversation, speak slowly and quietly; provide additional time for them to process information. 
  10. BELIEVE ME: Severe ME has a much lower quality of life than cancer, stroke, MS and chronic renal failure. Patients should be treated with respect, their physiological disease recognised, and their symptoms addressed. Please don’t magnify distress with disdain or medical gaslighting. 

By fostering an informed and compassionate healthcare environment, the hospital experiences and overall well-being of people with Severe ME can be substantially improved.

Alternatives to Hospital Admission 

To assist Severe ME patients to avoid risking extreme PEM and baseline deterioration with unnecessary hospital admissions, the World ME Alliance calls on global medical authorities to offer remote consultations, home visits and palliative care. If hospital admission is imperative, people with energy-limiting conditions should be provided with ME-sensitive transport, dim lights and sofas to lie on in waiting rooms or a stretcher in a separate darkened room.

The onus should be on medical authorities to coordinate multi-disciplinary, connected and continuous care rather than forcing the severely ill to waste scarce energy on driving the process, risking further deterioration. There should also be an acknowledgement of intersectional challenges and poverty compounding difficulties of obtaining treatment.

Further Resources

For more detailed guidance on supporting people with ME/CFS in hospital settings, please refer to the comprehensive booklet Supporting People with ME/CFS in Hospital developed by 25% ME Group, Action for M.E., Blue Ribbon for the Awareness of ME and the ME Association based on UK guidelines. 

#MEAction USA has developed a Health Information Form to help individuals clearly lay out their medical information and needs. 

Finally, check out #MEAction’s Hospital Checklist to help patients with ME plan and pack for a hospital visit. 

With thanks to the Severe ME focus group and resources of Sammy Lincroft m.e_and_more.

Severe ME Day

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August 8th

August 8th marks Severe ME Day.

It is a day to remember those we’ve lost to #severeME and to be the voice for those with #ME/CFS who are too sick to speak, too sick to leave their beds, to sick to leave their homes.

25% of people with ME/CFS are housebound or bedbound. Some spend decades in darkened rooms with noise cancelling headphones, no electronics, little to no social interaction. Noise, light, chemicals, and temperature changes can all induce severe pain.

Today we act as the voice, to build awareness for this cruel, debilitating disease. We seek to educate the general public and we advocate continuously for better treatment, better diagnostic tools, and better government support and access to home help services.

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