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:
Today, May 3rd the Associated New Zealand Myalgic Encephalomyelitis Society Incorporated provided an oral submission to the Health Select Committee, which was live streamed.
You can watch it here:
This video on YouTube features only the section of proceedings that relates to the ANZMES petition and oral submission. Watch the full video on the Health Select Committee’s Facebook page (with ANZMES submission at minute 39:10): https://fb.watch/khpmwwAaJR/. This video has been shortened for YouTube with permission obtained by the administration of the Health Select Committee.
Due out next week, for ME/CFS Awareness month, is a special episode of Know M.E. video podcast featuring ANZMES president Fiona Charlton, Executive Committee Member Wendy Matthews, Emeritus Professor Warren Tate, and RNZCGP’s Fellow Dr. Sarah Dalziel. These four discuss the oral presentation, how they think it went, and what we hope to achieve through this petition and consideration by the Health Select Committee.
The speech by ANZMES is presented here:
Tena katou katoa. Members of parliament, thank you for the opportunity to present further testimony in support of our petition. I am Fiona Charlton, president of ANZMES and I’m joined today by Emeritus Professor Warren Tate and RNZCGPs Fellow Dr. Sarah Dalziel who can answer your questions.
We understand that you have invited representatives from Whaikaha and Ministry of Health to also speak today.
In the written submission by Whaikaha, they recognise that ME fits the criteria for disability. But the responsibility lies with other government agencies to provide services. There is nothing dedicated to the unique needs of pwME.
The Ministry of Health states that the system doesn’t require people with ME (pwME) to be classed with a disability to access services. This unfortunately lacks understanding of what happens in practice, what pwME experience when trying to access services, and what the reclassification would mean for pwME. We invite representatives to meet with us to discuss ways in which the government can better support pwME.
Key points for you to please understand and consider:
ME is a disability. Post Exertional Malaise – the cardinal symptom of ME causes symptom exacerbation which is often misunderstood and makes levels of disability difficult to assess without adequate knowledge and education of the condition.
When you understand PEM you understand that pwME have to choose between making a meal and attending an appointment outside of the home. They have to choose between taking a shower and doing laundry. It is a constant battle between tasks and the energy capacity to function enough to carry out those tasks.
ME is a disability because of this energy limited capacity. It is a condition that impairs the ability to function on a regular basis both cognitively and physically and this frequently confines people to their home and beds, causing unemployment and an inability to perform basic tasks of daily life.
ME/CFS is a disability. There is no known cure. For many it is lifelong.
ME is a disability. It fits the definition, Whaikaha has also submitted that ME fits the definition.
The United Nations report to the government recommends that people with ME/CFS should have access to the disability support system and be included in disability policies and programs.
We created this petition to draw attention to the fact that the system is not working for pwME. Many fall through the cracks, many rely on whanau to care for them. Those who aren’t lucky enough to have family to care for them, experience PEM crashes regularly just trying to make a meal or do laundry. This means they’re in a constant state of unwellness.
Yet the eligibility criteria are inconsistent throughout the country resulting in a postcode lottery for health care. Besides the direct practical ramifications of this, it is a health equity issue.
The inconsistent criteria mean that in practice, the majority of pwME are unable to access servicesthat the Ministry of Health state is available.
People with ME are theoretically entitled to support under the chronic illness classification, however they’re NOT receiving it in practice.
The Needs Assessment and Service Coordination (NASC) organisation who assess home help eligibility confirm that ME patients are NOT considered for assessment. The closest equivalent disease, Multiple Sclerosis (MS), is accepted for assessment, despite evidence that MS has lower prevalence and less associated functional disability than ME.
The vast majority of pwME do not meet the criteria for home help under the Long Term Support – Chronic Health Conditions designation. Which is targeted at the over 65, those with very high needs, or for conditions such as diabetes.
Even those with ME with very high needs that do meet the criteria, get insufficient care and the care role falls to family. For example a 22 year old with severe ME who is bed bound, unable to feed herself, unable to toilet herself, bathe herself, she’s unable to speak and on a liquid diet. She’s unable to leave her darkened room due to extreme sensitivities to light, sound, touch. Her mother is now her fulltime carer, leaving her nursing job, reducing the family’s income, yet they’ve only been granted 22 hours of care per week from an outside professional and currently only 11 hours of this can be supplied due to staff shortages. That mother, who has given up paid employment to care for her daughter, is only given 11 hours break per week.
We call for standardised nationwide criteria and policies that recognise the severely debilitating nature of this condition. We call for funding. Currently there is no dedicated funding invested by the government for the wellbeing of people with ME/CFS, including no funding for research, despite its increasing prevalence.
In 2012 the Health Select Committee recommended the reclassification of ME to disability to the government after hearing our first petition. This recommendation was not implemented by the government.
We urge you to also make this recommendation, but be active in ensuring this results in real, practical change for pwME. With recognition and access to services they deserve.
Early intervention promotes recovery. Access to support promotes improved outcomes. It can help prevent further disability, further worsening of the condition which often requires hospitalisation. Access to home help enables a person with ME to potentially do a work from home job, if they can choose to use their limited energy on paid employment rather than making a meal, doing laundry, getting the children off to school with a packed lunch.
It’s not just about home help.
Being classified as a disability demonstrates the government understands how truly disabling this condition is. It legitimises ME and provides protection of rights as a disabled person. It will enable them to fit into the criteria for NASC assessment and home help services.
We recognise that the government has done some work for people with long COVID (LC). The advisory produced guidelines. There are long COVID clinics getting ready to open in 4 main regions of Aotearoa. But people experiencing PEM (which those with LC do just like pwME) will find it very difficult to make it to appointments. ANZMES and Complex Chronic Illness Support and other ME organisations have the solutions. We’re already helping pwLC and ME, so come to the table and discuss with us how best to supply the services required. We have the lived experience, the knowledge, and the expertise.
A change in classification would be a lifeline to dedicated support and wider acknowledgement that their illness is disabling, providing fairer access to established support and care.
We urge you to stand with us and help pwME.
Photo Credit: Action for ME
Photo Credit: Martyna Reynolds
If ANZMES had more than the allotted 10 minutes, we would have made more valid points such as:
The criteria for Home Help currently exclude pwME as sufficiently disabled, despite significant disease burden and limited functionality.
In order to be diagnosed with ME/CFS a person must be significantly impaired in terms of functioning in daily life, such as work or school, however the condition fluctuates in severity, with periods of remission and relapse.
ME is widely misunderstood: despite the increasing awareness and research proving the biomedical basis of the illness it is still often dismissed as a psychological condition or malingering, resulting in a lack of support from society and official support networks – further compounding the disability.
The most fundamental insight from research into ME/CFS and now also Long COVID is our understanding of Post Exertional Malaise and the importance of pacing. When supported adequately and no longer pushing through symptoms, people are able to prevent their illness from worsening and this approach is now part of best practice health care recommendations. Many doctors, welfare assessors, insurance assessors don’t adequately understand PEM, leading to denial of needed services or financial support and may demand pwME undertake ineffective or harmful therapies. Education is key here but this is a long-term strategy and a disability classification would send a strong signal and help people right now.
The World Health Organisation’s International Classification of Functioning, Disability, and Health (ICF) model establishes three levels of human functioning: (1) at the level of body or body part (body structures and functions domain), (2) the whole person (activities domain), and (3) the whole person considered in a social context (participation domain). In this classification, disability implies a certain degree of dysfunction at one or more of these same levels: impairments, activity limitations, and participation restrictions, respectively.
ME/CFS meets all levels of this definition of disability and in fact meets all definitions including those of the New Zealand government. Several symptoms contribute to disability for people with ME/CFS including fatigue, cognitive dysfunction, pain, sleep disturbance, post exertional malaise and autonomic dysfunction. These can have a significant impact on daily life, for example dysfunction of the autonomic nervous system can mean that a person is dizzy or faints when they go from sitting to standing.
An estimated 40,000 people suffer with ME/CFS in NZ and now we add to this 30,000 with unresolving long COVID.
Our surveys show that despite the fact that at least 25% of people with ME/CFS are severely ill and bedridden and 60% are severely debilitated and housebound, they are unable to access funded care set out for this kind of disability, even when their doctor has referred them.
Our surveys also show that people with ME/CFS, in NZ, feel ignored, isolated and their quality of life is low and this is largely due to a lack of support.
Quality of life is significantly lower compared with conditions such as cancer, depression, heart disease, diabetes, and rheumatoid arthritis. Many of these conditions have larger funding pools and patients can often more easily access home help.
A disability research programme in the UK, known as DRILL, found that “people with a wide range of different diagnoses share a lived experience of chronic illness that goes far beyond ‘fatigue’.” The research group developed the term ‘energy impairment’ to describe this experience and Energy Limiting Conditions as a broad cohort that experience disability. They include Fibromyalgia, a range of neurological, musculoskeletal, auto-immune and respiratory diseases. Their work is worth reading to gain insight into their perspective on the experience of energy impairment as a disability, in particular they state that fatigue is seen as being at the bottom of the disability hierarchy despite being very impactful on day to day activities like showering. For people with energy impairment, inequalities stem from this kind of attitude and practice of disbelief and invalidation that diminishes their lives.
ANZMES has provided a written report (to accompany the petition) with a series of solutions, which begins with reclassification and includes dedicated funding, a contract for wraparound services and the creation of a tailored support structure with a tiered system that recognises the varying degrees of disability experienced by people with ME/CFS. We also recommend that we align our health care approach with the latest research and recommendations by implementing a multi-disciplinary pilot.
From a person with ME/CFS: Getting up to the bathroom feels like a marathon. Every part of my body hurts and I feel as if my limbs are weighed down by something. My thoughts are clouded and escape me like they are lost in a thick fog. Today, I will choose between having a shower and making a meal before my legs give way altogether. The chores pile up around me and I feel as though I am being swallowed alive by this illness. I watch life pass me by in a blur and cling to the hope that tomorrow will be better.
Together we stand and ask to be seen, to be heard, and to finally be supported.
Home help is declined for an individual with impairments, if there is a family member who can do the chores for them. This means that family members have to take on care roles, instead of a professional coming into the home to carry out those duties. It changes the family dynamic when someone, usually unqualified in healthcare, has to bathe a family member, cook for them, help them to the toilet, or to the lounge because they can’t walk unaided.
When asked by the Health Select Committee if reclassifying would help people with ME/CFS, Whaikaha representatives stated that it would enable pwME to gain access to services, such as home help support. Martin Chadwick, Ministry of Health representative also stated that reclassification would enable NASC assessments and recognition for the condition.
We look forward to due consideration by the Health Select Committee and await their report, in which, we hope that they make the recommendation to reclassify ME/CFS as a disability, and put forward the solutions that ANZMES have presented. This is the first step. It is then up to the government to implement the recommendations, and this step is long over due.
ANZMES website is now available in Te Reo Māori, Samoan, Chinese, Hindi, Arabic, Afrikaans, and more.
“Inclusion and equity of access are important to us to ensure people with ME/CFS can view our web content in their native language.” Says ANZMES president Fiona Charlton.
ME/CFS does not discriminate. It affects people of all genders, age, and ethnicity.
It is easy to change the website to another language. Use the drop down menu in the top right of the screen, and select the language you wish to see. The website will change to that language in seconds.
ANZMES will introduce more languages over time to reflect the diversity of Aotearoa/New Zealand.
ANZMES is set to speak to parliament on May 3rd to present an oral submission to the Health Committee – an opportunity to strengthen the argument for the reclassification of ME/CFS to a disability.
Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) petition to reclassify ME/CFS as a disability was read in Parliament, on the 13th of September 2022, and has been under consideration with the Health Committee since then.
ANZMES president, Fiona Charlton, will speak to parliament on behalf of the members that she represents, along with Emeritus Professor Warren Tate and RCNZGPs Fellow Dr. Sarah Dalziel, who will answer the committee’s questions.
ME/CFS is a debilitating long term condition that affects multiple body systems and is characterised by Post Exertional Malaise, where symptoms worsen after periods of even ordinary activities. The current classification of ME/CFS as an illness rather than a disability makes it difficult for individuals who suffer from the condition to access the necessary support that they need to lead quality lives.
“We must make this chronic condition a disability now and give people fair access to the help that they need,” says Charlton.
A growing number of people with long COVID are now being diagnosed with ME/CFS, putting strain on already exhausted resources.
There is no dedicated funding for the condition and the current classification and system is difficult to navigate. There are complicated assessment processes and policies. There is disparity between regions causing access inequality.
In order to be diagnosed with ME/CFS a person must be significantly impaired in terms of functioning in daily life, such as work or school.
ANZMES has presented the government with detailed reports, research and recommendations and now hope that they will listen and take the urgent action that is needed.
Reclassification will lead to real improvements for those in need; providing access to disability support services – much needed home help, housing support, financial support, and counselling access.
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 ANZMES?
The Associated New Zealand Society for ME/CFS (ANZMES) have been providing information, awareness for ME/CFS, funding research, and advocating for people with ME/CFS for the past 43 years (since 1980). As the national advisory body for ME/CFS in New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME/CFS voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.
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.
Announcement – new CME accredited ME/CFS education series for health professionals
ANZMES is excited to announce a new CME accredited education series for health professionals, providing monthly news, articles, and podcasts with the latest evidence based information about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Post COVID Conditions, launching on the 13th of April.
Each month we will be talking to leading ME/CFS experts to provide clinicians with the latest information about ME/CFS, including diagnosis, best practice management, offering case studies and links to deep dive content and research to help you and your patients understand and manage both ME/CFS and Long COVID.
“ME/CFS is a complex and often misunderstood condition and we believe that education is key to improving outcomes for patients,” says ANZMES president, Fiona Charlton.
“We understand that there is a lot of information out there quoting flawed studies and offering outdated advice. We also understand how time poor health professionals can be. That is why we are offering a comprehensive and robust program with up-to-date, peer-reviewed information that gives them valuable CME credits, in a flexible, online format that is easy to access and digest.
“We’re thrilled to launch this resource to help healthcare professionals gain a better understanding of the condition.”
The podcast will feature interviews with leading experts, researchers, clinicians and patient advocates, including Dr Ros Vallings, Emeritus Professor Warren Tate, Dr Anna Brooks, Dr Neera Jain, and Dr Lynette Hodges and will cover a range of topics from classification and symptomology, best practice management, and biomedical research advances.
With informative and engaging discussions, this series promises to shed light on the many facets of ME/CFS where health professionals can explore the latest findings, treatments and lived experience of this debilitating illness.
The Associated New Zealand Myalgic Encephalomyelitis Society, (ANZMES) is the national advisory body for ME/CFS in New Zealand, offering representation, information, national level support and research funding.
ANZMES is a RNZCGP registered provider for continuing education.
On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long COVID is causing around the world, and sets out five key elements of a plan to drive change.
It is vital that the impact of Long COVID is recognised at the highest levels, and the World ME Alliance congratulates Dr Ghebreyesus on this stance.
However, as more research is undertaken, it is becoming clearer that a large proportion of those with Long COVID now meet the criteria for an ME/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.
The World ME Alliance (of which ANZMES is a founding member) has written to Dr Ghebreyesus calling on him to meet with representatives.
WHO Director-General Dr Tedros Adhanom Ghebreyesus during the 151st session of the Executive Board on 30 May 2022. This second shorter meeting of the year is a follow-up to the World Health Assembly. The Executive Board is composed of 34 technically qualified members elected for three-year terms. The main functions of the Board are to implement the decisions and policies of the Health Assembly, and advise and generally to facilitate its work.
Dr Ghebreyesus has previously committed to reaching out to ME experts, and we hope that through collaborative efforts we can learn from ME, and ensure that progress for people with Long COVID doesn’t leave the millions already suffering with ME behind.
Read the full letter from the World ME Alliance and its 19 members below.
