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Press Release – ANZMES Awards $25K Grant and $10K in Scholarships to Advance ME/CFS and long COVID Research 2024

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For Immediate Release – 8/10/2024

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is delighted to announce the recipients of their 2024 Research Grant and Scholarship Programme. ANZMES, the leading National Advisory on ME launched the programme in 2023 to support groundbreaking research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and long COVID. The programme can offer two $25,000 research grants to postgraduate students and academic researchers, specifically aimed at advancing laboratory-based studies. In addition, four $5,000 scholarships are available to support students undertaking ME/CFS and long COVID research in fields such as Health Sciences, Public Health, and Humanities. The programme is designed to foster a new generation of researchers and contribute vital knowledge to these under-researched conditions, which affect millions globally​​.

“This is our second year offering the programme, and we are very pleased to have received strong scholarship applications this year. We encourage postgraduate students to consider their Masters/PhD topics now, for next year’s funding round. In programmes with relatively low costs, scholarships can be used to help pay fees or study and living expenses,” says Fiona Charlton, ANZMES president.

This year, ANZMES has selected three outstanding researchers whose innovative projects will contribute to the growing body of knowledge in this field. Each recipient has been awarded significant funding to pursue their work, advancing ME/CFS and long COVID research in critical new directions.

Meet the 2024 Grant and Scholarship Recipients:

Associate Professor Mona Jeffreys and Kahurangi Dey
Victoria University of Wellington
Project: Exploring the Prevalence and Determinants of Food Insecurity in People with ME/CFS and/or Long COVID
This study, conducted in partnership with research candidate Kahurangi Dey, investigates food insecurity among individuals with ME/CFS and long COVID. The project will not only quantify the prevalence of food insecurity but will also contribute to the creation of an ME/CFS Registry in New Zealand, a vital resource for future research​.

“We are delighted to have been awarded a research grant from ANZMES. For many decades, research into ME/CFS has been overlooked, and these grants fill an important gap. Our research explores aspects of food insecurity in people with ME/CFS and Long Covid. Kahurangi is an expert in kai research, and Mona an expert in Long Covid, as well as living with ME/CFS. Of interest to us are the complexities and interrelationships between food access and utilisation for people living with chronic illnesses. We will be designing and distributing an online survey about food insecurity and barriers that people with ME/CFS and Long Covid face. Respondents will also be asked if they would like to be included in an ME/CFS Registry – it is essential that we start to count how many people are living with ME/CFS.” – Mona and Kahurangi

Melissa Blanc
Auckland University of Technology
Project: Exercise in ME/CFS Patients: Helpful or Harmful? A Systematic Review
Melissa Blanc’s systematic review aims to evaluate the safety and efficacy of exercise programmes for ME/CFS patients. With ongoing controversy regarding exercise as a treatment for ME/CFS, this research will address potential harms and benefits to ensure that exercise recommendations are based on high-quality evidence​.

“It is exciting to be selected for this scholarship. I hope this systematic review will be a valuable contribution to the body of evidence on the topic of exercise use in ME/CFS patients, and that it will help to improve the quality of life of ME/CFS patients.” – Melissa

Beth Hobbs
Victoria University of Wellington
Project: Psychological Support for ME/CFS Patients in Canterbury
Beth Hobbs, is applying to become a registered psychology intern to work with people and will eventually be working with ME/CFS patients in Canterbury to provide critical psychological services. This project focuses on the impact of long-term illness and psychological support to improve patient outcomes, with a particular emphasis on housebound patients​.

“Becoming a psychologist in the field of health has been a long-standing passion of mine. I feel incredibly honoured to have received the ANZMES Scholarship. The scholarship is intended to be used towards funding psychology registration training and an internship working directly with those experiencing symptoms of ME/CFS in Canterbury. ME/CFS has always been a strong focus in my work and study, which has strengthened with the rise of Long COVID. The negative psychological and emotional effects of ME/CFS can cause significant distress for the individual and their whānau, and deeply concerns the ME/CFS community. It will be an absolute privilege to work towards ameliorating people’s distress and assist those living with this challenging condition to enjoy a better quality of life and sense of self. My sincere gratitude to ANZMES for this opportunity!” – Beth

Associate Professor Mona Jeffreys and Kahurangi Dey (co-applicants) will receive a $25,000 grant, while Melissa Blanc and Beth Hobbs will each receive $5,000 scholarships to support their work.

ANZMES President, Fiona Charlton, expressed her excitement about the calibre of this year’s recipients “Each year, we are inspired by the dedication and innovation of our researchers. This year’s recipients not only highlight the urgent need for more research into ME/CFS and Long COVID but also embody the promise of future breakthroughs. We are proud to support their vital work.”

ANZMES continues to lead the charge in supporting vital research that seeks to improve the lives of those affected by ME/CFS and long COVID. Applications for next year’s grants will open in May 2025.

ME/CFS is a complex, debilitating, and often misunderstood medical condition, affecting millions of people worldwide, including at least 25,000 in New Zealand. Despite its widespread impact, 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 31st May 2025.

Visit anzmes.org.nz  for more information, grant regulations, and application forms.

What is ME/CFS?

Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a complex, chronic illness which affects multiple body systems, including the neurological, immune, and endocrine systems. It manifests through a variety of symptoms such as profound exhaustion, cognitive dysfunction, muscles and joint pain, unrefreshing sleep, headaches, sensory issues, and more. These symptoms are not alleviated by rest and are exacerbated by physical or mental activity. Prevalence in Aotearoa/NZ is estimated due to insufficient coding and tracking in the health system. Prorated overseas data (pre-pandemic) suggests that there were at least 25,000 people living with ME/CFS, that’s 1 in 250 adults and 1 in 134 youth. Based on US medical insurance claims, the NZ figure is more likely to be 45,000. With up to fifty percent of long COVID cases meeting the diagnostic criteria for ME/CFS these numbers will rise exponentially. ME/CFS is currently classified as a “chronic illness” rather than a disability in New Zealand, which poses significant challenges for policy recognition, support services, and funding. As a consequence, the lack of awareness and education among healthcare professionals leads to inaccurate patient diagnosis, and ineffective treatment and management plans.

Who is ANZMES?

We are the National Advisory on ME/CFS (and associated conditions) in Aotearoa/New Zealand. With four decades of knowledge and experience, we are the trusted leaders in ME/CFS research, representation, and education. 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/CFS 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 best practice. We represent the ME/CFS voice nationally in our advisory capacity, and globally through advocacy and leadership, as a founding member of the World ME Alliance.

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.

Correction of information

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ANZMES has previously published information stating that The Switch and Empower Therapies are alternate names for the Lightning Process. We wish to correct that statement. 

The Switch is an independent course run by Mel Abbott of Empower Therapies.

Mel Abbott is no longer a Lightning Process Practitioner and The Switch is not associated with the Lightning Process programme developed in the United Kingdom.

Disclaimer: ANZMES does not recommend any products, programmes, treatments, or techniques. ANZMES does not offer medical advice. It is up to an individual and their health team to decide what is appropriate for their specific situation taking their full medical history into account. The diagnosis of ME/CFS relies on clinical description/presentation and on exclusionary medical testing. It is imperative to seek qualified medical advice for evaluation. Any advice, either explicit or implied, is not intended to replace qualified medical advice. ANZMES does not accept any responsibility for any treatment undertaken by readers of this website or for any error or omission in connection with information shared here.

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

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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.

First World ME Day

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image of the world from space, with text The first ever World ME Day May 12th 2022 worldmeday.org

First World ME Day and theme launched by alliance members

The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12th May this year. This new initiative aims to bring together organisations and unify efforts to raise awareness and campaign together on Myalgic Encephalomyelitis (ME). Through collective action, we will step closer to our goal of a world without ME.

World ME Day will build on the incredible efforts of advocates around events, such as ME Awareness Week and Chronic Immunological and Neurological Diseases (CIND) Awareness Day. By focusing on a single day and collaborating across many organisations, we aim to maximise our collective power.

The theme for the first year of World ME Day is #LearnFromME.

Read More: here

image of a lightbulb inside a chalk drawing of a thought bubble with the text #learnfromme world me day

What should the world #LearnFromME?

ME is a global health crisis – up to 30 million people are living with this disease worldwide, and when we take into account the effect on families, carers and friends too, the impact of this disease cannot be overstated.

But there is much to be learnt from this disease – from the willpower and determination of those living with it, to the incredible advocates working towards change, to an understanding that the most meaningful change will comes from high-quality research.

We want to use World ME Day to reach out to health professionals on a personal basis, build understanding of ME and take another step towards a world that understands ME.

Key facts for health professionals

  • People with ME have a lower average quality of life than all other diseases they have been compared to, including diabetes, cancers and heart disease.

Read more: here

Countdown Priority Assistance

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Good news for online shoppers at Countdown, ANZMES has set up a priority assistance code for all of our members to use. Please see the instructions below:

“Countdown supermarkets have been very busy these past few weeks and there has been high demand for our online shopping service. We are about to announce how we will be working to prioritise vulnerable customers who want to use our online shopping service. We know that your members will be some of these customers and we want to help you help them. Please ask your members to register for Countdown online Shopping at shop.countdown.co.nz. After that they will need to complete this form:https://shop.countdown.co.nz/…/content/priority-assistance

Please enter the code ANZMES in the field where it asks for a Super Gold Card number so we know they are a member of your organisation and we can work to filter them through the process as quickly as possible. If they have a Super Gold Card they can enter that number too, after the code.Once we’ve processed their application they will receive an email to confirm that they have been accepted into the Priority Assistance group. What this will mean is that when they shop online they will see dedicated delivery time slots on our website that others can’t see subject to availability. These delivery times will be reserved for use by our Priority Assistance customers. There aren’t many time slots at the moment due to heavy demand but we are working to grow capacity and there should be more availability over the next week or so. Priority Assistance customers will still be subject to the same limits as other online shoppers and everything else about the service will remain the same, as it is for other shoppers. All deliveries will be Contactless which means our drivers will just place the groceries on the doorstep, knock on the door and go. They will also send you a text message to let you know your groceries have arrived. If your members have further questions please ask them to visit our website and review the COVID-19 Frequently Asked Questions or have them ask Olive, our Virtual Assistant, that will pop up to chat on our website. They can find Olive at https://www.countdown.co.nz/If they need help with the Priority Assistance application process please call our dedicated number 0800 477 655 or email us at priority@countdown.co.nz. If they need help with anything else they can call our Customer Care team on 0800 40 40 40 but please note that they are very busy and the wait times can be quite long so please only call if it is absolutely essential. We hope this small step will help your members in the coming days as we all go through this experience together.”

ANZMES Survey 2020

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To be completed and sent in by 15th December 2020

The Survey Link is:

https://www.surveygizmo.com/s3/5728298/ANZMES-Survey-2020

1. It is totally voluntary to complete the survey. 

2.  Completion of the survey is anonymous and so we will not know who has completed the survey or be able to link a person with their responses.

3. All the responses will be joined together so only group information will be used.

4. The final statistics from the survey will be shared with others.  For example it may be shared with the media via a press release. This information will also be used for lobbying. 

We are aware that ME/CFS has a large impact in a variety of areas so we could have included many areas in this survey however, we are also aware that completing a long survey would not be possible for many people with ME/CFS so we have not been able to include all the areas.

We would encourage you to complete the survey, as the more people who complete the survey the more notice others will take of the results. If you know others with ME/CFS please encourage them to complete the survey as well. 

The results will be summarised in the Meeting Place and on the ANZMES website.

Dr Vallings to speak in Hamilton

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Dr Vallings is speaking in Hamilton at the Methodist Church, corner of Normandy Ave and Bader St, Melville, Hamilton 10.30 to 11.30 on Thursday 13th August 2020.

Please Register by phoning Tracey on 07 8344745 or email tracey@mswaikato.org.nz.

Please arrive at 10.15 for a prompt start. Morning tea provided. A gold coin koha/donation will be greatly appreciated.

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