MEDay – ANZMES

ANZMES: A #GlobalVoiceForME on World ME Day 2024

February 12, 2024February 8, 2024 by anzmes01

As we approach World ME Day on May 12th, 2024, ANZMES joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME). This significant day coincides with the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases, underscoring the critical need to address this global health crisis.

In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. Today, we estimate that at least 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, ANZMES proudly stands alongside World ME Alliance members across the globe, collectively amplifying support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

No Cure, No Universal Treatment

One of the harsh realities we face is that there is currently no cure for ME, nor universally effective treatments. Individuals grappling with ME often endure not only the physical toll of the illness but also the stigmas that accompany it. It is imperative that we, as a global community, come together to address these gaps in understanding, research and treatment.

Building a #GlobalVoiceForME

This World ME Day, ANZMES will be joining the call upon individuals, organizations, and countries to become a #GlobalVoiceForME. As a collective, we increase our power. By uniting our voices, we can influence the trajectory of ME research, treatment, and support.

ME knows no borders, and neither should our efforts to combat it. It is crucial that countries around the world work collaboratively to address this crisis. By fostering international cooperation, sharing research findings, and building recognition in every nation, we can pave the way to mitigate the devastating effects of ME.

Taking action for World ME Day 2024: In the coming months, ANZMES and the World ME Alliance will be announcing actions you can take to create change on May 12th, 2024. A big focus will be building relationships with health ministries of different nations, as they have the power to advocate with the World Health Organization. Your involvement will be vital to this effort, so keep your eyes peeled for more info coming soon.

Alongside this, we are developing tools for you to use, like our much-loved custom poster maker, a new film, graphics, posters, and more. We can’t wait to share these with you!

In the meantime:

Spread the Word: Use your social media platforms to share information about ME. Let your friends, family, and followers know that World ME Day 2024 is coming on May 12th, and that you’ll be asking them to join as a #GlobalVoiceForME!
Educate Yourself: Knowledge is a powerful tool. Learn about ME in your country through ANZMES or reach out to others online to become part of the global ME community. Your voice matters, and you can contribute to breaking down misconceptions and stigmas surrounding the illness.

As we prepare for World ME Day 2024, we hope you will stand united with ourselves and the World ME Alliance, raising our voices to be heard around the globe. By growing the #GlobalVoiceForME, we can accelerate change, fostering a future where those affected by Myalgic Encephalomyelitis find hope, understanding, and ultimately, a cure. Together, let’s turn awareness into action and transform the landscape for individuals living with ME.

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

May 9, 2023 by anzmes01

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 12^thto 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

First World ME Day

April 6, 2022 by anzmes01

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

Post author:World ME Alliance
Post published:28 February 2022
Post category:The World’s ME News / World ME Alliance / World ME Day
Post comments:2 Comments

The World ME Alliance, a collaborative of organisations from across the globe, is launching World ME Day on 12^th 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.

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.

ME/CFS Day May 12, 2021

May 12, 2021 by anzmes01

May 12^th is the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. As we mark this day each year, we highlight how you can support the millions of people globally (and at least 25,000 here in NZ) who suffer from ME/CFS. We mark this day on Florence Nightingale’s birthday, because it is thought that she developed ME/CFS after an infection contracted during the Crimean War.

ME/CFS is a serious, disabling, long-term disease which affects multiple bodily systems (immune, endocrine, neurological and autonomic). [1] The World Health Organisation classified ME/CFS as a neurological disease back in 1969. Despite this, ME/CFS has often been misunderstood, stigmatised as psychosomatic, and underfunded. Today we have a much clearer understanding of the biological basis for the disease through research from the likes of Harvard, Stanford, Cornell, and DePaul universities in the USA, and our very own Emeritus Professor Warren Tate of the University of Otago.

This year, with COVID-19 still present globally, we also want to direct attention to the estimated 25-35% of cases [2] who have not recovered from the virus. Those people who are still unwell 12 weeks after the expected recovery period, are classed as having “Long COVID” and some go on to receive a diagnosis of ME/CFS as well.

There are similarities between ME/CFS and Long COVID (some symptoms overlap):

ME-CFS *	Long COVID *
Severe fatigue with post-exertional malaise	Fatigue
Cognitive dysfunction (brain fog, memory lapses)	Brain fog
Gastrointestinal issues	Gastrointestinal issues
shortness of breath	shortness of breath
Fevers/Chills	Fevers/Chills

* this is not an exhaustive list of symptoms

This is not surprising because a large percentage of those with ME/CFS, develop it after not recovering from a virus such as Epstein Barr/Mononucleosis, SARS-CoV, etc., or from other infectious illnesses such as Lyme disease (Mayo Clinic, 2020).

What does it mean to have ME/CFS? The list above is not exhaustive. Those with ME/CFS also experience significant deep muscular pain and can also experience a varying degree of symptoms that link to dysfunction of distinct systems in the body [3]:

Immune	Neuroendocrine	Autonomic
Recurrent sore throats, flu-like symptoms, tender/swollen lymph nodes	Thermostatic dysregulation (feverish but will cold extremities (hands, feet), night sweats, intolerance of heat and cold	Circadian rhythm dysfunction (exhausted during day, wide awake at night unable to sleep). Unrefreshing sleep
Sensitivities (to light, sound, smells, food, chemicals, medications)	Information processing and thinking difficulties, perceptual disturbances	Orthostatic intolerance, irregular heartbeat, low blood pressure, POTS

ME/CFS is a chronic illness, meaning it is long term.

It can be classed as having three distinct levels of symptom severity [4]:

Mild – at least a 50% decrease in pre-illness activity but may still be able to achieve part-time work and activities

Moderate – mostly housebound (can’t attend work/school or do normal activities)

Severe – bedbound and dependent on help with all daily care
(this occurs in approximately 25% of all ME/CFS cases).

ME/CFS knows no bounds – it affects all ages, ethnicities, genders and socioeconomic groups. At this point in time there is no cure, but there is research going on to develop a suitable treatment based on previous research into root cellular causes and dysfunction. Currently Prof. Tate is working on comparing the molecular similarities between ME/CFS and Long COVID patients recruited through the practice of collaborating physician Dr. Rosamund Vallings, in order to not only understand the underlying pathophysiology (root causes and malfunctions) but also to discover potential treatments. [5] Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.”

How can you help?
5 ways:

1 Educate – This awareness day, please take time to learn more about ME/CFS and Long COVID by visiting links suggested in this article, by perusing the rest of the ANZMES website and joining our Facebook page: If you or someone you know has ME/CFS share your personal stories with others, on social media, and take time to listen to others’ stories.

2 Support – on May 12^th wear BLUE to raise awareness and show support for people with ME/CFS, their families and caregivers as well as the researchers who study ME/CFS. Please use social media to spread information about ME/CFS – share this article, and post photos of you and your family and friends wearing blue. Use hashtags #ISTANDforMECFS #MECFSUnity #ANZMES #BLUEforMECFS #millionsmissing #thelonghaulandME #MEandCOVID #solveMECFS

3 Share our posters and memes and this blog on social media, with friends and family, with your local GP and healthcare providers, and lets show all those living with ME/CFS and Long COVID that they are not alone, they are heard and supported.

Posters:

4 Lobby your local MP to demand that:

Evidence-based health guidelines are used by all government agencies to ensure accurate information about ME/CFS for timely diagnosis and management and access to necessary services (including home help and supported living payments)
Dedicated research funding is set aside for treatment development
ME/CFS is reclassified as a disability so that those unable to work due to the severity of their illness are able to gain access to the services they need.

5 Join our organisation to receive lobbying letter templates, information sheets, and access to the latest news and developments.

We look forward to seeing your presence on social media this May 12^th for ME/CFS International Awareness Day 2021. Thank you.

[1] Kerr, J. (2020). https://doi.org/10.3390/biom10111484

[2] http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects and https://www.omf.ngo/covid-19-to-me-cfs-study/

[3] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[4] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

[5] http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects

Awareness Day: Media/Press Release

May 7, 2021May 6, 2021 by anzmes01

May 12 marks the international Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, on Florence Nightingale’s birthday (as it is thought she developed ME/CFS after an infection contracted during the Crimean war). Each year on this day ANZMES (the Associated New Zealand ME Society) seeks to provide education and build awareness, as well as advocate for and support those with ME/CFS and their families. This year, with COVID-19 still present globally, attention must also be on those diagnosed with Long COVID. Long COVID will present new challenges. Many of those challenges have already been faced by the ME/CFS community.

Myalgic Encephalomyelitis (ME/CFS) is a serious long-term illness causing disabling symptoms exacerbated by both mental and physical exertion [1]. Despite the person often appearing ‘well’ there are debilitating symptoms that include but are not limited to: incapacitating exhaustion, post-exertional malaise, pain, sleep disturbances, cognitive and gastro-intestinal issues, and orthostatic intolerance (severe light-headedness when standing). The illness affects all genders, races and ethnicities. It affects children, those at university still studying, those just entering the workforce, mums and dads juggling home and work and people at the peak of their careers, right up to the elderly who already have other struggles. Some will recover after some months or years, but those who are still sick two years after onset are likely to suffer this illness for the rest of their lives.

In NZ there are at least 25,000 people living with ME/CFS – that’s approximately 1 in every 250 adults and 1 in every 134 youth. It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV) [2]. The COVID-19 virus (SARS-CoV-2) has resulted in a post-viral syndrome for an estimated 25-35% of all cases [3]; a syndrome similar in symptomatology to ME/CFS. Those still unwell twelve weeks after onset [4], are classed as having Long COVID and some go on to receive an ME/CFS diagnosis too. This means the prevalence of ME/CFS in NZ and worldwide is increasing.

ME-CFS [5]	Long COVID [6]
Severe fatigue with post-exertional malaise	Fatigue with post-exertional malaise
Cognitive dysfunction (brain fog, memory lapses)	Brain fog
Gastrointestinal issues	Gastrointestinal issues
shortness of breath	shortness of breath
Fevers/Chills	Fevers/Chills

There is currently no cure for ME/CFS. However researchers around the world, including Cornell, Stanford and Harvard Universities in the USA, are working to understand the disease, find a diagnostic test and develop more treatments. Despite this, research is woefully underfunded. In the last year The European Union has called for more funding [7]. Researchers here in New Zealand, including a team led by the Rutherford Medal winner Emeritus Professor Warren Tate of the University of Otago, have to rely on donations from people with ME/CFS, their families and organisations such as ANZMES. One such study also funded by Brain Research NZ is to assess the pathophysiological similarities between ME/CFS and those diagnosed with Long COVID [8]. Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.” [9]

The increase of people with ME/CFS and Long COVID has far-reaching repercussions. For society this means a loss of available people in the workforce and further burdens to the public health system. For the individual it means increased medical costs and a loss of salary. Between 40-81% of those with ME/CFS are unable to maintain employment due to fluctuating, disabling symptoms [10]. A decrease in social contact can result in social isolation, loneliness, and diminished quality-of-life [11]. Even those with ‘mild’ symptoms experience at least a 50% decrease in pre-illness activity [12]. Imagine being unable to meet your friend for coffee at the local café because you don’t even have the energy to shower and dress. Or consider being housebound, not just for a few weeks (like many kiwis experienced during lockdown) but for decades or a lifetime. Imagine the teenager who cannot physically attend school and has to complete coursework from bed. Or picture not being able to play with your children or grandchildren, and missing out on seeing them in school plays and sports. This is the reality for many with ME/CFS.

This year, on the International ME Awareness Day (May 12th), please think about those with ME/CFS and Long COVID, who face ongoing isolation and difficulties associated with living with a chronic illness.

Resources are available for patients, carers, teachers and health professionals through the Associated New Zealand ME Society (ANZMES) at www.anzmes.org.nz.

#myalgicencephalomyelitis #MECFS #LongCOVID #PressRelease #MediaRelease #Fibromyalgia #postexertionalmalaise #millionsmissing #chronicillness #chronicillnesssupport #chronicillnesscommunity #autoimmune #chronicillnesswarriors #endMECFS #openmedicinefoundation #longCOVIDalliance #longhaulers #thelonghaulandME #MEandCovid19 #MEandCOVID #SolveMECFS #WarrenTate #RosVallings #AnnaBrooks #ANZMES #MECFSexperts #nationaladvisoryforMECFS

[1] https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

[2] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[3] Open Medicine Foundation estimates https://www.omf.ngo/covid-19-to-me-cfs-study/

[4] https://www.medicalnewstoday.com/articles/long-covid#definition

[5] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[6] https://www.pharmaceutical-technology.com/comment/long-covid-complications/

[7] https://www.europarl.europa.eu/news/en/agenda/briefing/2020-06-17/22/myalgic-encephalomyelitis-more-funding-needed-for-research-into-complex-illness

[8] (http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects)

[9] https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

[10] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[11] Jason, et. al, (2008) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

[12] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs