World ME Day

World ME Day 2024 – Press release

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Date: 24.04.2024

World ME Day Sheds Light on Global Health Crisis: Millions Affected by COVID triggered cases

The National Advisory on ME (ANZMES) is calling on Kiwis to come together for World ME Day as we battle a global health crisis.

Already worldwide there are an estimated 25 million people with Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS).

There has been a significant increase in cases of ME with a shift to COVID-19 being the main trigger for this disabling illness.

There are estimated to be 65 million cases of long COVID worldwide and 50% meet the criteria for an ME diagnosis.

This World ME Day, May 12, 2024, marks the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases. Despite this, there is still no universal cure or treatment.

To highlight this global health crisis and demand that action is taken now, ANZMES proudly stands alongside World ME Alliance members across the globe calling Kiwis to get involved and become a #GlobalVoiceForME to amplify our efforts to be heard.

ANZMES is the National Advisory on ME and is a founding member of the World ME Alliance, supporting the ME community since 1980.

ANZMES president, Fiona Charlton, says the government needs to recognise that the pandemic is clearly not over and more action is needed to protect and support people.
“The convergence of ME and COVID-19 has created a perfect storm, amplifying the challenges faced by patients and healthcare providers.

“Health protections have been removed but cases keep rising and people are suffering,” she says.

ME is a debilitating chronic illness that is often misunderstood, characterised by post-exertional malaise (an exacerbation of symptoms after minimal exertion), and a range of other symptoms that significantly impact daily functioning, such as pain, cognitive impairment, and orthostatic intolerance (blood pressure and volume dysregulation).

In 1969, the World Health Organisation classified ME as a neurological disease and included ME and CFS in 2019 under post viral syndrome. An estimated 80% of people with ME/CFS develop it after a virus.

Given the similarities in symptoms both ME and long COVID benefit from a similar approach to support and management.

Associate Professor Mona Jeffreys at Te Herenga Waka / Victoria University of Wellington says “The COVID-19 pandemic has resulted in large numbers of patients with long COVID, many of whom meet diagnostic criteria for ME. “ME is a debilitating condition, which cannot be treated, but with compassion and evidence-based care, the symptoms and their impact can be lessened.

“I call on all health professionals treating someone with ME to understand that this is a neurological, not psychological, illness. “Encouraging your patient to exercise is likely to worsen their fatigue and post-exertional malaise. “Suggesting treatments such as graded exercise therapy and cognitive behavioural therapy is outdated and is not evidence-based. “Investigating symptoms of POTS, that can respond to treatment, is important.

“The best thing you can do is to familiarise yourself with the Best Practice Guidelines, and treat patients accordingly.” The National Advisory on ME released easy to follow best practice in December 2023.

The hard facts

The latest Health New Zealand data shows 3,873 COVID-19 cases were reported in the last week and 21 deaths were attributed to the virus (as at 23/04/2024)[2]. 78% more sick leave was taken in 2022 (than 2020) and wait times for emergency patients were exceeded by 95% of DHBs, in 2022.

Of 65 million long COVID cases, half may develop ME.[3] Added to the existing estimated numbers globally, that’s 57.5 million people worldwide significantly ill with ME/CFS. In Aotearoa this equates to 416,350 people with this debilitating condition, up from an estimated 25,000.

Global research shows reinfection continues to pose a significant threat of post-viral complications with implications for long-term socioeconomic burden.[4],[5]

“Without appropriate management, the window for recovery gets smaller and smaller, and that is why international best practice must be implemented” says Charlton.

Research also highlights a disparity between government funding and level of disease burden for ME, in comparison to other chronic illnesses.[6]

Emeritus Professor Warren Tate, of the University of Otago says, “the major clinical subgroup of Long COVID, the post viral syndrome arising from the global pandemic, has brought a greater awareness of the needs of the many ME/CFS patients suffering from a very similar ongoing debilitating fatigue illness.”

“Long COVID provides the opportunity for there finally to be a focus on education, and standardised best practice management and social support for the significant numbers of patients of both groups.

“Managing the burden on families and their communities, and understanding how ME/CFS and Long COVID affect our health and economic systems looms as an urgent priority not only for New Zealand but for all countries.” says Tate.

World ME Day serves as a catalyst for action urging the government and public health authorities to allocate more resources to develop strategies for early identification, diagnosis, and management of post-viral illness, including appropriate support for individuals with ME.

Each national organisation around the globe has the opportunity to foster change by building relationships with local and national governments, encouraging them to develop appropriate policies and programmes to deliver vital services for care and intervention. Each Government has the power to advocate for recognition of this global health crisis, and ensure that the World Health Organisation implements action to tackle this serious and significant problem.

“There are many very sick people battling for support and being ignored. There is no cure or universal treatment for ME and no dedicated funding or efforts from the government to try to fix this. As the National Advisory on ME, we have delivered best practice guidance to the government and all medical bodies in Aotearoa/NZ and believe it must be adopted to deliver the standard of care required.

We need world health leaders to step up and take action but we also need the support of everyday individuals in the community,” says Charlton.

“When we unite as a Global Voice for ME we are showing health and government officials that they must listen, they must address needs, and they must bring vital change now.” Charlton says.

Each year the ME/CFS organisations throughout New Zealand join together as a collective to participate in World ME Day and share the same message. This year the collective joins the global voice for ME and encourages everyone to get involved in the following ways –

How to take action for World ME Day 2024:

  • Send – a letter to your local MP or the Health Minister, Dr. Shane Reti asking for them to take action on behalf of the ME and long COVID community.
  • Share – be a #GlobalVoiceForME, share your ME story on social media, share your lived experience or make a poster to educate others about ME. Use the hashtags #GlobalVoiceForME #GlobalHealthCrisis #NZCollectiveVoiceForME.
  • Participate – send ANZMES your photo holding a piece of paper that says how many years you’ve been unwell with ME, to be used in a video on social media.
  • Learn – learn about ME and long COVID so you can offer support to friends and family living with the condition – visit anzmes.co.nz and worldmealliance.org
  • Fundraise – host a ‘Blue Sunday’ Tea Party for ME to raise funds see https://the-slow-lane.com/blue-sunday/ for more information.
  • Light it up – Councils and business owners can light their place up in blue in solidarity for ME.

Join us in acknowledging World ME Day and taking meaningful steps toward a future where individuals with ME receive the recognition, care, and support they deserve.

Aotearoa/NZ ME/CFS Collective includes:

ANZMES – National Advisory on ME

Complex Chronic Illness Support

M.E. Awareness NZ

MECFS Canterbury

MEISS Otago and Southland

ME Support NZ

Rest Assured Charitable Trust

Who are ANZMES?

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 – 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.

Contacts:

ANZMES – National Advisory on ME

Contact info – Angela Cayford – info@anzmes.org.nz

Complex Chronic Illness Support

Contact info – Miranda Whitwell – info@ccisupport.org.nz

M.E. Awareness NZ

Contact info – Rose Camp –  m.e.awareness.nz@gmail.com

MECFS Canterbury

Contact info – Nicola Stokes – info@mecfscanterbury.nz

MEISS Otago and Southland

Contact info – Heather and Kerry – meiss.support@gmail.com

ME Support NZ

Contact info – Vanessa Atkinson – info@mesupport.org.nz

Rest Assured Charitable Trust

Contact info – Phil Morton –  info@restassured.org.nz

ANZMES: A #GlobalVoiceForME on World ME Day 2024

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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.

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

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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

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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

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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

World ME Day 2023 – Press release

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World ME Day raises awareness of devastating symptom impacting millions post-COVID
Twenty-two organizations from around the world unite to promote awareness of ME – the disease where pushing harder can make you sicker.

May 12, 2023 – In honor of World ME Day on May 12, 2023, ANZMES and the World ME Alliance are
proud to announce the launch of a global awareness campaign addressing the hallmark symptom of ME: post-exertional malaise (PEM) and using the tagline “ME: the disease where pushing harder can make you sicker.”

It is estimated that between 17-30 million people live with ME worldwide. However since the COVID-19 pandemic hit, this figure is thought to have doubled. There are now 65 million people living with long COVID worldwide, and half of those meet the criteria for an ME diagnosis.

Myalgic encephalomyelitis (ME) is a disabling, chronic and complex disease. There is no diagnostic test, cure, nor universally effective treatments for ME, and patients often suffer for life.

The hallmark symptom of ME is post-exertional malaise (PEM) – a worsening of symptoms after
physical, mental, or emotional exertion that would not have caused a problem before the illness. For
some patients, sensory overload (light and sound) can induce PEM. These episodes are sometimes
referred to as “crashes,” and may last days, weeks, or permanently.

Kiwi amateur athlete, Aimee, recently diagnosed with ME/CFS, says, “I used to run competitively, now
simple activities like taking the rubbish out make me feel like I’ve done a marathon. It’s hard for people to understand because I can feel okay and look okay but if I push myself today I can end up in bed for weeks.”

For World ME Day this year, the World ME Alliance campaign aims to ensure the harmful effect of
pushing harder is the first thing that comes to mind when someone hears about ME.

World ME Alliance co-chair and Solve M.E. CEO Oved Amitay notes, “Post-exertional malaise is a
devastating symptom of both ME and long Covid that is far too often disregarded or incorrectly managed by health care providers. PEM is a varying symptom that is challenging to recognize, and doing so requires intense listening to the person experiencing it. It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”

Patients from around the world are encouraged to share their PEM stories on social media and with local press, and to get involved with their national ME organizations. “If we listen to the lived experience of those with PEM, we can #LearnFromME,” says Amitay.

New Zealand is a sporting nation that prides itself on staunch strength and many carry the mantra
“harden up” but for people with ME/CFS and long COVID this can be a harmful mindset because of PEM. ANZMES president, Fiona Charlton says “we want to share the knowledge around PEM to increase understanding, compassion, and create a positive thought space around pacing yourself for your own health.

“ME/CFS and long COVID can affect anyone, even athletes so it is important that we get the message across about PEM and how to manage it.”

The national and regional ME organisations in Aotearoa join together this May 12 with a special event to raise awareness about PEM and the self-management technique known as pacing. “We have made a new series of resources including video interviews with leading health professionals and people with ME/CFS and long COVID discussing PEM and how to avoid it and recover. We would love to see Kiwis getting involved sharing their own experiences” says Charlton. The event also asks people with these conditions to generate posters and share them on social media
(https://worldmealliance.org/worldmeday/custom-poster/) and encourages health professionals to
download new resources from the website (www.anzmes.org.nz/worldmeday2023/).

ANZMES is proud to be leading this international effort in Aotearoa/New Zealand to battle the stigma
associated with ME and call for more research funding into this disease.

To find out more about ME or take #LearnFromME action to support the cause, visit www.worldmeday.org

About the World ME Alliance:
The World ME Alliance is composed of ME organizations from around the world. Its membership is made up of senior leads/representatives from national ME organizations, working together to achieve change for people with ME at a national and international level.

To learn more about the World ME Alliance, visit www.worldmealliance.org. Contact the World ME
Alliance via email and follow the Alliance on Facebook or Twitter.

To learn more about ANZMES, visit www.anzmes.org.nz. Contact ANZMES via email and follow on
Facebook.
To learn more about the participating Aotearoa/NZ ME/CFS organisations visit:
https://anzmes.org.nz/worldmeday2023/ or Facebook.

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