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