ANZMES AGM – Saturday 18th November 2023

All are welcome to the ANZMES AGM to be held via ZOOM this year, Saturday 18th November starting at 1pm.

Featuring guest speaker Dr Sarah Dalziel talking about attending the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery.

Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).Details below 🙂

Join Zoom Meeting

https://us06web.zoom.us/j/83551071674?pwd=d2piQ1A4cFkvcklnbUJFU3MwL3Nwdz09

Meeting ID: 835 5107 1674

Passcode: 787146

Press Release – ANZMES Awards Academics 25K Grants to Boost ME Research 2023


For immediate release – 18/09/2023

Two New Zealand researchers have been chosen to receive the Associated New Zealand Myalgic
Encephalomyelitis Society (ANZMES) annual grant of $25,000 to undertake vital research into
increasing understanding of Myalgic Encephalomyelitis (ME, also known as Chronic Fatigue
Syndrome), in Aotearoa.

ANZMES, the National Advisory on ME, launched the new grant and scholarship programme for
postgraduate students and academic researchers this year – aimed at supporting those
interested in researching ME and long COVID. With six funding opportunities available, ANZMES
encouraged applications from those seeking to undertake research that furthers understanding,
treatment, or prevention of ME and long COVID, including two $25,000 grants and four $5,000
scholarships to support research and study costs.


The 2023 Grant recipients are:
● Principal investigator: Dr. Nicholas Bowden, Research Fellow, Department of Women’s and
Children’s Health, University of Otago (pictured below. Photo credit: University of Otago).


Co investigators: Keith McLeod, Associate Principal, Kōtātā Insight.
Dr. Rosamund Vallings, retired GP, Howick Health and Medical
Centre.
Emeritus Professor Warren Tate, Department of Biochemistry,
University of Otago.
Professor Barry Taylor, Department of Women’s and Children’s
Health, University of Otago.
Francisca Anns, PhD Candidate, COMPASS Research Centre,
University of Auckland.


The study will investigate the health, labour market, and social service use of people with
ME, in NZ, through a population study.
Dr. Bowden says, “we are excited and grateful to receive this grant to undertake what we believe
is an important piece of research, providing foundational population-level evidence on health,
labour market, and social service outcomes for those with ME/CFS in Aotearoa/New Zealand for
the first time.”


● Principal investigator: Dr. Lynette Hodges, Senior Lecturer School of Sport, Exercise and
Nutrition, Massey University, Registered Clinical Exercise Physiologist (pictured below.
Photo credit: Massey University).


The study will investigate activity and energy management and
the hallmark symptom post-exertional malaise (PEM), in people
with ME through an observational study that assesses exertion
during normal daily activities of living, such as doing dishes or
laundry.

Dr. Hodges says, “I am so thrilled to learn that my research
application was chosen. I hope that this research will be able
to be of benefit to those with ME/CFS. As a Clinical Exercise
Physiologist, I am keen to help people live their best lives and hope that this study will develop a
better understanding of how activities of daily living affect the physiology of those living with
ME/CFS.”

Dr. Bowden and Dr. Hodges will both receive the $25,000 Grants through their respective
universities, to carry out their research projects.

ANZMES President, Fiona Charlton, says, these investments will help facilitate a crucial source of
New Zealand based research, furthering our understanding of the disabling condition.

“We are really pleased by the calibre of the work proposed by both recipients.
“With Dr. Bowden’s work, for the first time we will have a foundational study that offers insight into the lives and experiences of people with ME in Aotearoa.

“We understand the burden of disease from an international research perspective but New
Zealand based studies are lacking.

“Research into PEM and activity management will also be invaluable for both patients and health
professionals and will have implications for long COVID management and recovery.

“While we did not receive any scholarship applications, we encourage postgraduate students to
consider their Masters/PhD topics now, for next year’s funding round. In programs with relatively
low costs, scholarships can be used to help pay fees or study and living expenses,” says Charlton.

ME is a complex, debilitating and often misunderstood medical condition and although millions of
people suffer with the illness worldwide, including a significant population in New Zealand, there
is remarkably little research or funding available.

This ANZMES funding programme was made possible by the generous support of members.

The Grant was awarded by ANZMES on the recommendation of their Grants and Scholarships
Subcommittee.

Next year’s funding applications open May 31st.
Visit anzmes.org.nz for more information, grant regulations, and application forms.


What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often triggered by a viral
illness and involves overwhelming fatigue and other symptoms that range in severity as it affects
many body systems, such as the immune, neuroendocrine and autonomic nervous system.
The key characteristic of ME/CFS is post exertional malaise (PEM) which presents 12-48 hours
after exertion, and can result in days to weeks of exacerbated symptoms. For the very severe, this
exertion can be simply trying to speak, or eat.


Who are we?
We are the National Advisory on ME in Aotearoa/New Zealand. With four decades of knowledge
and experience, we are the trusted leaders in ME education, representation, and research. Our
expertise comes from a reputable medical team of advisors, including 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
executive committee comprises experts in their respective fields for governance, policy,
leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as
ANZMES, to provide support, information dissemination, and representation, achieving past
outcomes through dedication, passion, time, and knowledge of lived experience. Today, the
organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing
Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the
community voice.
We continue to disseminate evidence-based information nationally, and represent the ME voice
globally as a founding member of the World ME Alliance through advocacy and leadership.
ANZMES latest education programme for health professionals – Know M.E. – is a video podcast
and news series featuring up-to-date, evidence based research and information on ME and Post
COVID Conditions.

Press Release – ANZMES welcomes HSC recommendations for improved access to disability services for people with ME/CFS.

For immediate release – 22/08/2023

Petition response: ANZMES welcomes Committee recommendations for improved access to disability services for people with ME/CFS

ANZMES, the National Advisory on Myalgic Encephalomyelitis (ME), has welcomed the Health Select Committee’s (HSC) response to its petition delivered in September 2022, calling on the Government to reclassify ME as a disability.

The Health Select Committee presented its report to parliament on 17th August 2023, sending a strong message acknowledging ANZMES petition to reclassify ME – also known as Chronic Fatigue Syndrome (CFS) – as a disability with the recommendation that eligibility criteria for disability services be amended.

The 10 page HSC Report recommends that the Government take note stating “we understand that ME/CFS meets the Government’s definition of a disability. We therefore, encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.”

The Report also acknowledged concerns raised by ANZMES that the current classification and system is flawed with complicated assessment processes and policies and disparity between regions causing access inequality.

ANZMES President Fiona Charlton says the acknowledgement and recommendations are “a step in the right direction.”

“The struggle is real for so many people with ME and improving access to Whaikaha-funded support services could give so much relief to them.”

The HSC Report acknowledged that the eligibility criteria differ between Whaikaha and Te Whatu Ora-funded services, resulting in inequitable access.

The Report also states that a person does not require a classified disability to access health services, however in practice ANZMES has found that many with ME/CFS are denied help, despite the obvious need. ANZMES understand that support needs to be prioritised but at present, due to a misconception around the severity of the illness and the lack of functionality that results, many are seen as low on the priority scale.

ANZMES plans to continue to discuss this with the government and Whaikaha and would like them to consider working together to improve current assessment pathways and streamline the process to reduce access inequity across the country.

People with this debilitating condition face a barrier to support under the current classification of “chronic illness” and as a result experience poor quality of life and health inequity. With increasing numbers of people with long COVID (LC) being diagnosed with ME/CFS the existing support through nonprofit organisations is set to become unmanageable, with case numbers still rising.

People with ME want to see the actual implementation of these recommendations. Practical help is urgently needed for this growing under-supported, disabled community that could lead to a better prognosis and better quality of life.

To view the full report:

HSC-2022-Final-report-Petition-of-ANZMES

——————————————————————————–

What is ME/CFS?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often triggered by a viral illness and involves overwhelming fatigue and other symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.

The key characteristic of ME/CFS is post exertional malaise (PEM) which presents 12-48 hours after exertion, and can result in days to weeks of exacerbated symptoms. For the very severe, this exertion can be simply trying to speak, or eat.

ME ANZMES logo with albatross bird representing support

Who are ANZMES?

The Associated New Zealand ME Society (ANZMES) has been providing information, awareness for ME, funding research, and advocating for people with ME for the past 43 years (since 1980). As the National Advisory on ME in Aotearoa/New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.

————————————————————————————-

For more information contact

info@anzmes.org.nz

BenefitME

CivicTheme demo logo

BenefitMe is a new website aimed at helping people find what benefits they can receive.

There are lots of Work and Income benefits for people who need help in Aotearoa New Zealand, but it can be hard to know which ones you can get. BenefitMe helps you find out what you’re eligible for and what happens if things in your life change.

BenefitMe is a community effort to put some power back into the hands of the public, so anyone can find the support and services they’re legally eligible for and be more able to engage from a position of confidence with government departments.

Payments currently supported:                                     

  • JobSeeker    
  • Sole Parent Support                                       
  • Disability Allowance
  • Accommodation Supplement 
  • Emergency Benefit (see Discretionary benefits)

BenefitMe is an initiative by the Digital Aotearoa Collective (DAC), a civil society group committed to addressing injustice and improving wellbeing in Aotearoa New Zealand. Click the link to find more about BenefitMe

ANZMES release Resources for Primary Care

ME/CFS and long COVID in Primary Care

ANZMES releases two new resources to guide assessment and management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and long COVID.

ANZMES (the national advisory for ME/CFS and a RNZCGP registered provider of continuing education) has released two short reference guides for primary care. These resources offer a snapshot of the key aspects of diagnosis, assessment, symptom management, comorbidities, and care and support planning.

“ME/CFS is a complex and often misunderstood condition, so the aim of this one page resource is to provide a simple reference guide for busy health professionals. We believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.

“Although assessment and evaluation for long COVID differs to that of ME/CFS, the management of long COVID, when there is no organ damage, is very similar to the management of ME/CFS. Utilising the expertise of our medical team, we provide a separate one page resource for long COVID in primary care.” she says.

ME/CFS

long COVID

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Definition

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term multi-systemic illness involving the nervous, endocrine, autonomic, and immune systems. The symptoms can range from mild to severe. This guide is designed to help GPs assess and manage ME/CFS and can be used in conjunction with the most current Diagnostic and Management Guidelines for ME/CFS.

Diagnostic Criteria

Despite there being over 20 different types of criteria developed over the past few decades, the criteria produced by the Institute of Medicine, in 2015, is considered the easiest, quickest, and most relevant criteria for a diagnosis of ME/CFS. This stipulates that three primary symptoms must be present: 1) post exertional malaise (PEM)  2) unexplained fatigue 3) unrefreshing sleep. At least one of either orthostatic intolerance or cognitive impairment must also be present. Symptoms must be present for at least six months, be moderate to severe and present 50% of the time.

The symptoms of a number of diseases can mimic ME/CFS, therefore it is important to conduct differential diagnosis to rule out other conditions first (for example,other fatiguing illnesses – anaemia, autoimmune disease, cardiac disease, endocrine disorders, malignancy, rheumatological disorders, neurological disorders – (such as MS, Parkinsons), primary sleep disorder, depression. Routine blood tests and urinalysis will help with this and it is important to note that with ME/CFS these standard tests are often within normal range.

During the acute phase of ME/CFS lymph node palpation may demonstrate slight enlargement. Although this reduces as the illness continues, patients may experience ongoing tenderness and pressure pain points.

Comorbidities

ME/CFS has common comorbidities such as Fibromyalgia (an overlapping condition), dysautonomia, allergies, irritable bowel syndrome (IBS), sleep disorders, Ehlers Danlos Syndrome or hypermobility, and multiple chemical sensitivities (MCS). However the presence of post-exertional malaise and symptom exacerbation, a key illness feature, increases the likelihood of ME/CFS as the correct diagnosis.The NASA Lean Test or the Active Stand Test are useful for diagnosing dysautonomia, such as neurally mediated hypotension or postural orthostatic tachycardia syndrome.

Triggers

ME/CFS has multiple triggers. The virus most associated with this illness is Epstein Barr (mononucleosis/glandular fever), however other viruses (for example, SARS-1, cytomegalovirus) and bacterial infections (for example, lyme, Coxiellia burnetti) are also associated, as are genetics, and environmental factors such as toxic chemical exposure or trauma (physical/emotional). ME/CFS can also be triggered by anaesthesia and surgical procedures.

Symptom Management

ME/CFS is a highly individualised illness, requiring a personalised, patient-centred approach. As there are many symptoms it is useful, in consultation with the patient, to identify the most pressing symptoms and tackle one at a time, per appointment. The main symptoms that can be managed with regular monitoring and review are: pain, sleep, stress, and general health measures. However, the key tool to introduce to patients is pacing – a self-management technique that balances activity and rest to help reduce or prevent PEM. Energy management helps support rehabilitation.

Everyone’s available energy limits are unique and what one person with ME/CFS can do in a day may be very different from another person with ME/CFS. During the course of the illness the energy envelope will fluctuate alongside the severity of symptoms. The more severe the symptoms, the less energy an individual has to do even a basic activity, such as showering or making a meal. In the acute phase, with appropriate pacing, an ME/CFS patient can recover. If symptoms remain longer than 18 months, continued activity pacing is recommended. 

Care and Support Planning

Care and support planning is crucial for a patient-centred approach. It is important to assess their individual circumstances and needs and educate the patient on symptoms and prognosis. Empathy is key, and acknowledging the reality of living with ME/CFS can build an effective therapeutic relationship, as can recognising that they may have experienced prejudice or disbelief. It is very important to include written handouts to help counter the cognitive impairments, providing the patient with a summary of your discussion and management plan.Patients may also require work certificates, insurance support, and letters to employers or schools.

When planning care and support a team-centred approach is beneficial, incorporating specialists, physiotherapists, occupational therapists, counsellors, and other health professionals as required. Local ME/CFS support groups can help patients with socialisation, understanding, and support. You can find a list of regional groups on the ANZMES website.

Additional resources with useful information, to inform your clinic practice, include local Health Pathways, the 2021 NICE guidelines,1 and Clinicians Primer.2  ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn credits whilst they learn about ME/CFS and post COVID conditions.

References

1 National Institute for Health and Care Excellence.(2022) ‘Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis andManagement’. 
https://www.nice.org.uk/guidance/ng206/resources/myalgic-encephalomyelitis-or-encephalopathychronic-fatigue-syndrome-diagnosis-and-management-pdf-66143718094021

2 Carruthers, B. M. et al. (2012). Myalgic encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine. 270, 327–338.

long COVID

Definition and Trigger

Long COVID has one trigger, the SARS-CoV-2 virus, also known as post-acute sequelae of SARS-CoV-2 or Post COVID condition, or long haul COVID are terms to describe long-term unexplained symptoms following infection with COVID-19 virus and are symptoms characteristic of ME/CFS and post viral syndromes.

Diagnostic Criteria

Long COVID is defined as symptoms consistent with COVID-19 infection that persist for more than 12 weeks after initial infection that cannot be explained by an alternative diagnosis. Symptoms may last weeks, months, or years, and may fluctuate as in ME/CFS. Some people with long COVID, who are still experiencing symptoms after six months, may fit the diagnostic criteria for ME/CFS. The Ministry of Health has published guidelines.

Cormorbidities

As long COVID is relatively new, there is not evidence to suggest that it has typical comorbidities in the way ME/CFS does. It may however, have issues related to organ damage or upper respiratory tract disorders, that are unique to this particular virus.

Symptom Management

People with long COVID experience a wide range of symptoms, with potentially multiple body systems involved, as is the case with ME/CFS. Research is showing that people with long COVID may experience more than 200 different symptoms, and many of them overlap with the experience of people with ME/CFS.

Breathing disorders and upper respiratory tract complications differentiate long COVID from ME/CFS. A referral to a cardio respiratory physio is helpful for breathing pattern assessment.

The cardinal symptom that characterises ME/CFS is post exertional malaise (PEM), which is a worsening of symptoms after physical, mental, or emotional activity, which can occur immediately or up to 72 hours after the activity. People with long COVID are also experiencing PEM or what is more commonly referred to for this subgroup as post exertional symptom exacerbation (PESE). It is very important, despite the patient’s strong desire to return to work, sport, and daily routines, to ensure that they follow a slow, steady, and measured return to activity. Patients must be able to perform daily activities (washing, dressing, meal prep etc) without PESE before a careful, symptom paced return to exercise is considered. An activity diary is very helpful to track symptoms and energy levels, to measure what types of activity induce PESE and those that do not. Referrals to occupational therapists are very helpful for energy saving devices, and support with learning to pace activities.

Care and Support Planning

As with ME/CFS (see information above), a patient-centred approach is paramount. Before a COVID-19 infection, the majority of people experiencing long COVID were healthy, fit, and of working-age, living active lifestyles. The sudden change in functionality and energy can be a big shock and there is much higher incidence of anxiety and depression for people with long COVID when compared to those with ME/CFS. Wellbeingsupport.health.nz is a great resource for free early intervention for mild to moderate mental health support.

The ME/CFS support groups and organisations throughout Aotearoa/NZ have opened their doors to people with long COVID – offering support, advocacy, advice, information, and education.


CME Education

For health professionals wanting to learn more about ME/CFS and long COVID, ANZMES is currently offering ‘Know M.E.’ – a video podcast and news series, which enables clinicians to earn CME/CPD credits whilst they learn about ME/CFS and post COVID conditions.

Visit ANZMES medical professionals page for more information.


ANZMES is the national advisory for ME/CFS offering representation and advocacy, national level support, education, and research funding. ANZMES is a RNZCGP registered provider of continuing education.

ANZMES speaks on RNZ about reclassification

ANZMES President, Fiona Charlton spoke alongside Emeritus Professor Warren Tate from the University of Otago, and patient advocate Tom Harris to Kathryn Ryan on Nine to Noon on Radio New Zealand this morning.


You can view the Radio New Zealand interview news bulletin here: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018892129/the-fight-to-get-me-chronic-fatigue-syndrome-classified

You can listen to the interview episode here:
https://www.rnz.co.nz/audio/player?audio_id=2018892129


The petition to reclassify Myalgic Encephalomyelitis to a disability is currently with the Health Select Committee, who are due to provide their recommendations to parliament in the coming months. This follows an oral submission to them by ANZMES on May 3rd 2023, a written submission presented in October 2022, and the petition with 6,444 signatures, submitted to parliament in September 2022.

ANZMES created this petition to draw attention to the fact that the system is not working for people with ME/CFS (pwME). Many fall through the cracks, many rely on whānau to care for them. Those who aren’t lucky enough to have family to care for them, experience post exertional malaise crashes regularly just trying to make a meal or do laundry. This means they’re in a constant state of unwellness with a myriad of over 100 symptoms. You can learn more about post exertional malaise on ANZMES World ME Day page.

Put simply:

ME/CFS fits the definition for disability
BUT
DOES NOT fit the criteria to access disability support services.

Those same support services are available under Long Term Support – Chronic Health Conditions
BUT
People with ME/CFS DO NOT fit the NASC* criteria to access them.

The system is not working for people with ME/CFS.

*NASC – Needs Assessment Service Coordination.

ME/CFS fits all definitions for disability created by the United Nations, The World Health Organisation, The Human Rights Act 1993, Statistics NZ, and the NZ government’s own definition (copied below).
A disability is an impairment — physical, intellectual or sensory — that lasts
for more than 6 months and limits your ability to carry out day-to-day activities.

pwME experience physical, cognitive, and sensory impairments.
The condition for most, is chronic, for some it is lifelong.
To be diagnosed with ME/CFS, one must experience at least a 50% reduction in ability to function (compared with pre-illness capacity).

ME/CFS fits the definition of disability. ME/CFS is a disability.

What would it mean to reclassify?
A change in classification would be a lifeline to dedicated support and wider acknowledgement that this illness is disabling, providing fairer access to established support and care.

Being classified as a disability demonstrates the government understands how truly disabling this condition is.
It legitimises ME/CFS as a physiological disease, which would foster the standardising of healthcare for pwME. Legitimising ME/CFS as the disability it is, should override and negate outdated opinions and treatments. It would provide pwME protection of rights as a disabled person.

It would ensure the government upholds its legal obligation to adhere to the United Nations (UNCRPD) Report (September 2022) which states that ME/CFS should be included in disability policies and supported by disability services.

It will enable pwME to fit into the criteria for NASC assessment for home help services. Access to services equates to intervention that promotes recovery or at the very least improvement in symptom management. When a person is constantly exerting beyond their energy capabilities, they crash. This is a health issue. NASC assessments are not conducted by the Ministry of Social Development, they are conducted through hospitals and the healthcare system. It is a healthcare issue.

ANZMES President, Fiona Charlton states “Members of Parliament are elected by the people, for the people. It is a democratic government’s role to ensure all policies, procedures, and programmes meet the needs of all New Zealanders. People with ME/CFS are New Zealanders. Yet, their needs are not being met. There is no-one in parliament representing us. We have to advocate for ourselves, yet who is listening? Who in parliament will stand up for and advocate for the needs of pwME? Who will ensure our needs are met?”

In 2012, following a petition by ANZMES Executive Committee member, Wendy Matthews, the then Health Select Committee made the recommendation to reclassify ME/CFS as a disability.

This was NOT implemented by government.

Fiona Charlton states “We have hope that the Health Select Committee will once again make the recommendation to reclassify ME/CFS as a disability.
However this time, we also urge these committee members to use their roles within parliament to ensure the government implements the advice.”

ANZMES invite members of parliament to speak with them. ANZMES has the knowledge, expertise, and lived experience. ANZMES has world-renowned clinicians on the executive committee and medical team, and researchers like Emeritus Professor Warren Tate are available for discussions.

ANZMES current Royal NZ College of General Practitioners (RNZCGP) CME (continuing medical education) accredited series: Know M.E. is freely available to all health professionals seeking to understand the biomedical, physiological nature of ME/CFS and evidence-based management strategies.

The information is available for a considered, evidence-based response from parliament to meet the needs of people with ME/CFS. ANZMES offers solutions in its written submission (October 2022), and written report submitted to Health and Disability Ministers and Commissioners in July 2022. You can view the oral submission here: anzmes-speaks-to-parliament.

ANZMES looks forward to the recommendations from the Health Select Committee in the coming months.

ANZMES is dedicated to continually advocating, supporting, educating, and funding research for pwME.


Who are ANZMES?
The Associated New Zealand Society for ME/CFS (ANZMES) have been providing information, awareness for ME/CFS, funding research, and advocating for people with ME/CFS for the past 43 years (since 1980). As the national advisory body for ME/CFS in New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME/CFS voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.

Grant and Scholarship Programme

ANZMES Launches New Grant and Scholarship Programme to Boost ME/CFS and long COVID Research

ANZMES, New Zealand’s national advisory for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), is pleased to announce the launch of a new grant and scholarship programme for postgraduate students and academic researchers. The programme is aimed at supporting those who are interested in researching ME/CFS and long COVID.

woman in lab coat with back to camera, in a laboratory with test tubes and equipment in foreground and background.

There will be six funding opportunities awarded each year to Postgraduates who undertake research that furthers understanding, treatment, or prevention of ME/CFS and long COVID, including two $25,000 grants to support laboratory research studies and four $5,000 scholarships to support students undertaking research projects. Academic researchers can also apply for the grants.

ME/CFS is a debilitating chronic condition involving overwhelming ongoing fatigue. Although millions of people suffer with the illness worldwide there is remarkably little research or funding available.  

ANZMES President, Fiona Charlton, says “we are excited to launch this new programme, which aims to support the next generation of researchers and innovators to build a vital source of New Zealand based research, contributing to knowledge and scientific progress that will benefit the community. 

“Promoting and investing in ME/CFS-focused research is a core objective of the organisation. Our funding programme is made possible by the support of our members.”

Two grants are being offered for postgraduate studies or academic research in either the Faculty of Science, Faculty of Medical and Health Sciences, Faculty of Public Health, or Faculty of Sport and Exercise Science to contribute towards the costs of laboratory analysis for a research project on ME/CFS or ME/CFS and long COVID.

Four scholarship awards will be offered each year to students to contribute towards the expenses of studying for a postgraduate degree in the Faculty of Health Sciences, Public Health or Humanities/Social Sciences for a student who can demonstrate financial project cost requirements or study expenses and who are conducting study/research on ME/CFS or ME/CFS and long COVID.

Applicants will be selected by ANZMES on the recommendation of their Scholarships Subcommittee.

Applications for 2023 awards open 31 May and close 31 July.
Further information and application forms are available at https://anzmes.org.nz/research-funding-programme

To mark #WorldMEDay, a number of councils around New Zealand are lighting up public landmarks in blue on Friday night, May 12th, 2023 – Press Release

Date: 12/05/2023
For immediate release


Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) is a disabling, chronic and complex disease affecting more than 20,000 New Zealanders.
The hallmark symptom of ME is post-exertional malaise (PEM) – a worsening of symptoms after physical, mental, or emotional exertion. These episodes are sometimes referred to as “crashes,” and may last days, weeks, or permanently.
Visit www.anzmes.org.nz/voices-of-me to learn more about what it is like living with this
condition and increase your understanding of ME/CFS and Post-exertional malaise.


For more information about World ME Day and ME/CFS visit:
www.anzmes.org.nz/worldmeday2023/


Thank you to these sites for shining a light for people affected by ME/CFS.

Waitaki District Council 

• Craig Fountain in the Oamaru Public Gardens

Ashburton District Council

• Clock Tower

Christchurch City Council

• New Brighton Pier

• Bowker fountain (Victoria Square)

• The Bridge of Remembrance

• Botanical Gardens (Curators House)

• Vaka A Hine (142 Worcester St)

• Scott Statue Plaza (Corner Worcester Street and Oxford Terrace)

Wellington City Council

• Michael Fowler Centre – crown

• The Albatross Fountain (Frank Kitts Park Boat Shed 8, The Lagoon)

• Hikitia Floating Crane (Taranaki St Wharf)

Tauranga City Council

• Wharf Street Lights


If you live near any of these landmarks and can take a photo of the landmark illuminated in blue, please share with us below, or by tagging @LearnFromME.nz or using the LearnFromMEnz hashtag when you post.

Voices of ME

Post-Exertional Malaise (PEM) is a condition that impacts the energy and recovery system in people with ME/CFS.  

PEM is the worsening of symptoms after physical or mental effort and this can happen one or two days after even minor activity.  People with ME/CFS describe PEM as “crashing” or “collapsing” with a relapse of symptoms.  It is helpful to understand that normally if a person is fatigued after exertion they will rest and then energy will be restored, but in ME/CFS this physical recovery process is dysfunctional.

Everyone’s experience of ME/CFS and PEM is unique but most can agree that PEM is one of the most frustrating aspects of the condition because it can lead to a significant decrease in the ability to perform everyday activities and can stop them from being able to do things that they love.  It can also be confusing or difficult for others to see or understand the struggle because they may appear active and well one day but be bedridden the next, due to this broken energy system.

Here we will share community experiences of what it is like to live with PEM and how it has impacted daily life. We hope these personal stories provide some insight into the realities of ME/CFS and the importance of awareness and support for those living with this debilitating condition.

When i push harder i get sicker... My condition forced me to make sacrifices in order to improve. hashtag learn from me, 12th may, world me day.

Anne-Marie, Complex Chronic Illness Support member, shares her story:

Anne-Marie was diagnosed with ME/CFS in 2019 after several years of declining health. Looking back now, she recognises that it wasn’t normal to always feel tired or ill, or take longer to recover from simple activities than the people around her. 

Previously a professional cellist, music teacher, and arts administrator, she was always on the go. She could push through the pain and fatigue, but would be left bed bound, initially for one day, then two, then weeks afterwards, with headaches, brain fog, full body pain, and debilitating fatigue. 

After her diagnosis of ME/CFS and subsequently POTS (Postural Orthostatic Tachycardia Syndrome), Anne-Marie had to give up her work, music and hobbies, including her role as a volunteer puppy raiser for Mobility Dogs Trust.

A  pretty young smiling white woman with long brown hair sitting in a wheelchair, wearing light blue skinny jeans, blue lace up shoes, a striped jumper with shades of grey. Beside her sits her service dog, a labrador, wearing a service dog cape. They are outside, in a tiled courtyard with shrubbery in the background.

Anne-Marie now requires a wheelchair to leave the house, which she is able to do once every week or fortnight, with significant recovery time required afterwards.  

And yet she knows she is lucky to be able to leave the house at all. 

Severe cognitive difficulties leave her unable to do one of the things she loves most – reading. Being largely housebound also left her unable to access many things, including visiting the library, op shops or bookstores. 

In 2021, Anne-Marie started a small business to share her love of books with others, selling secondhand books online, hoping to target other housebound individuals. She has “met” many other chronically ill individuals online, who share similar struggles with their health, isolation, and lack of understanding or available treatments. 

While the business is a labour of love, finding a way to work from home was also necessary to help with the added costs of disability and living with a chronic illness that is not supported or recognised by the government. 

Running a small business from home gives her the freedom and flexibility to work around her severe energy limits, and allows her to feel connected to the rest of the world from bed. But like all good things with ME/CFS, even this small amount of work comes at a steep cost, and wouldn’t be feasible without a large support system. 

Despite no longer being able to read physical books, she relishes the chance to chat about books with people online, and has adapted her hobby into a love of audiobooks. She recognises the privilege and support that has allowed her to adapt her life into something that brings her joy, despite such a truly disabling disease.

I learnt that even seemingly insignificant activities like using a knife and fork, can take huge amounts of energy.
Will you hashtag Learn From ME?
World ME Day
It's the feeling of having the flu, running a marathon every day, and being hungover, all at once.
Hashtag Learn From ME.
World ME Day.
When I push harder I get sicker ...
ME/CFS derailed my life 25 years ago with loss of job and no longer being able to do activities that I had loved doing such as running, tramping, and cycling.
Hashtag Learn From ME 12th May
World ME Day
Hashtag Learn From ME
visit worldmeday.org
World ME Day
These words are overlaid over an image of a young white woman, lying in bed with noise cancelling headphones on, and an eye mask. Next to her on the bedside table are various medications, a glass of water.

Kate, ME Support member, shares her story:

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

Kate also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

Dr. Goodwin shares of his experience with living with PEM.
World ME Day
Pushing hard can make different symptoms worse. These words are overlaid over a graphic of a white person covering their eyes with their hands with a grimace on their face. Their head dissolves into pixellated squares demonstrating the toll that PEM takes on the brain and cognition.
World ME Day. Sensory overload comes from everything everywhere all at once. Graphic of a female holding her hands over her face, with swirls of clouds and waves all around her representing overload of sensors from stimuli.

For myself I feel like ME/CFS has halted my life. I went from running Ultra Marathons, completing Iron Mans and being on the go every day to now spending days laying down, too weak to even lift my phone up when I’m at my worst.”

I went from my job as a Registered Nurse where I looked after others, giving my all to get them better, to now fighting to get my Dr to understand how unwell I feel. CCI Support has been able to support me better than my own Dr has. I finally felt like I wasn’t alone and now have a plan to actually get better. It’s given me hope that I won’t feel like this forever.”

Complex Chronic Illness Support member.

“Having a chronic illness – feels like there is an invisible barrier between me and the world. Most people don’t understand what it’s like to be behind the barrier.”

Complex Chronic Illness Support member.

“Some days I can manage a couple hours of computer work before I need to stop for the rest of the day. Other days, I can work all day, and I feel grateful for that productivity. However what quickly follows is several days of being bedbound, unable to think clearly, with no energy to function. My pain increases, I get flu-like symptoms, lose my voice, and have a searing headache across my temples.”

ANZMES member.

Watch the Complex Chronic Illness Support members monthly meeting as they discuss Post-Extertional Malaise and its affects on the lived experience: https://youtu.be/fASkYVmQ_zA

We urge those experiencing PEM to pace today for a better tomorrow.
To find out how, visit our World ME Day page.

World ME Day. Pace yourself today for a better tomorrow.
These words are overlaid on a graphic of a forest, and grass, sun shining and a dove carrying a branch. In the foreground is a couple. A black man in a wheelchair holding the hand of an asian woman.

Learn about PEM and pacing at our special event on May 12 for World ME Day at LearnFromME on Facebook or our YouTube Channel.

Do you need support? Find out more about the ME/CFS and long COVID organisation or support group in your local area.

Read more lived experiences and personal stories of people living with ME/CFS and long COVID, and create your own poster here: https://worldmealliance.org/worldmeday/custom-poster/ 

World ME Day asks you to learn about the broken energy system in ME/CFS – PRESS RELEASE

PRESS RELEASE – for immediate release

World ME Day asks you to learn about the broken energy system in ME/CFS

If you’ve never heard of post-exertional malaise (PEM) you’re not alone. But for people living with ME/CFS or long Covid understanding PEM is crucial to managing their illness. World ME Day on May 12 is an opportunity to increase your understanding of this little-known phenomenon.

Post-exertional malaise (PEM) is something that everyone with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome)  experiences. So what is it? Put simply, PEM is a debilitating and abnormal response to normal activity.

People with ME/CFS and long COVID have what is called an energy envelope. This is the amount of energy they have on any given day to function. Research and experience shows that if a person expends an equivalent amount of energy to the amount they have available they will reduce the symptom flares they experience.

When people with ME/CFS and long COVID push to do more than their energy envelope can cope with, the severity of their symptoms increase. This period of reduced functionality and exacerbation of symptoms typically starts within 12 to 48 hours after the activity or exposure and may last for days, weeks, or may also be permanent.

When PEM hits, people report existing symptoms increase, and that new ones appear including brain fog (executive functioning), flu-like symptoms (sore throat, muscle pain, increased fatigue); muscle weakness; increased sensitivity to noise, light or touch; pain; sleep problems.

How much and what type of exertion triggers PEM is different for each person. Triggers can include:

  • physical (walking around the mall or folding the washing);
  • cognitive (thinking, talking, reading)
  • processing emotional events (both positive and negative stressors)
  • sensory overload (noise, light, touch, smell, temperature, vibrations such as in vehicles)
  • physiological processes (digestion, temperature regulation, fighting infections)
  • orthostatic (sitting or standing upright vs lying down)
  • multi-tasking (even if individually each activity is within their Energy Envelope, e.g. talking while walking, or thinking while in a noisy environment)

Leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist, Massey University, says “Individuals with ME/CFS are not lazy or deconditioned. Our research has shown physiological changes for those with ME/CFS. Both planned exercise and even simple activities of daily living can cause PEM.”

PEM is best managed by creating an individualised routine of rest and carefully paced activities within the individual’s current energy envelope. GP Cathy Stephenson states “If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, it’s Pacing. Above all else. Pacing.”

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

She also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.

Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

World ME Day: LearnFromME – “ME: the disease where pushing harder can make you sicker.”

Visit the World ME Day information from ANZMES on https://anzmes.org.nz/worldmeday2023/

Follow the Learn From ME page on Facebook  on May 12th to follow the World ME Day campaign. This page is a collaborative initiative between the regional and national ME/CFS organisations:

ANZMES (Associated NZ ME Societies)
Complex Chronic Illness Support
ME Support
MECFS Canterbury
MEISS Otago
ME Awareness NZ
Rest Assured Respite Trust

Find out more about ME/CFS or to take action to support World ME Day by visiting: www.worldmeday.org

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