Petition read today

The ANZMES petition to reclassify ME/CFS as a disability was read in parliament at 2pm Tuesday 20th September 2022. It is now with the select committee, and ANZMES will provide a written submission to the committee before the deadline of 7th October.

Radio New Zealand provided coverage on The Panel with guest Kate Waterworth from AUT speaking about the petition with panelists Mark Sainsbury and Amy Carter. (minute 9:18).

Photo Credit: Marcus Aurelius on Pexels.

Professor Warren Tate spoke with Charlotte Ryan on the Afternoon show:

ANZMES President Fiona Charlton discussed the petition with Nick Truebridge on Checkpoint:

Dr. Tanisha Jowsey, of University of Auckland discusses the need to classify ME as a disability with Casper on The Wire at 95b FM. (minute 48:29):

On Science Media Centre, Prof. Tate, Kate Waterworth, and Dr. Tanisha Jowsey provide their expert opinion on whether ME/CFS should be reclassified:

Scoop published the ANZMES press release and so did Voxy.

It even got a mention on George FM.

Have you heard coverage of the story? Send us an email and tell us where you heard or read about the petition to reclassify ME/CFS as a disability.

Reclassification update

The Ministry of Health (MoH) has not provided an official response to ANZMES petition for ME/CFS to be reclassified as a disability.

ANZMES are waiting for an official response rather than relying on comments provided to the media.

We have advocated for reclassification for many years, and this is not the first petition. ANZMES will continue to petition the government until change is achieved.

Following previous advocacy efforts, the MoH position to not reclassify was due to budgets and allocation of funds. It has been about numbers rather than the people affected.

ANZMES President, Fiona Charlton says, “What they have failed to understand previously, is that ME/CFS is truly a debilitating and disabling condition, with little recognition, and inadequate access to services.

Reclassification would help provide the support needed for people with ME/CFS to have improved quality of life and improved equity to health services.”

There are an estimated 45,000 people living with ME/CFS in New Zealand, and the potential for this to drastically increase due to many with Long COVID also fitting the diagnostic criteria for ME/CFS.

Many of these people living with this disabling condition do not fit the criteria for NASC, Care Plus, and Long Term Conditions support through government services.

Home help is a crucial service but not easily accessible currently. Reclassification would legitimise how debilitating this condition is and validate the condition as a disability, enabling access to support.

Young woman lying in bed wearing eye mask and noise cancelling headphones. Many medicines sit on the bedside table.
Photo credit: Martyna Reynolds.
Man in wheelchair reaching up to get a glass jar from an overhead cupboard in a kitchen, whilst cooking.
Photo credit:

The petition has been accompanied by an evidence-based report, sent to Whaikaha (Ministry of Disabled People), Health & Disabilities Commissioner, Disability Rights Commissioner, Health Select Committee, Health Ministers, and the COVID-19 Response Minister, and ANZMES is awaiting their responses.

ANZMES is very pleased with the new appointment of CEO to Whaikaha. Paula Tesoriero understands the needs of people with ME/CFS and we not only congratulate her in her role and believe she’ll do a great job for all people living with disabilities, but we hope that in this new role she’ll be in the position to affect real positive change for people with ME/CFS.

Charlton says, “we have not given up hope.”

“After this due consideration by parliament and portfolio ministers, and the new CEO of Whaikaha, we hope that we will receive the very long overdue ‘yes’ we have all been waiting for.”

The petition closed on 29th August. Simeon Brown, National MP for Pakuranga kindly agreed to submit the petition on ANZMES behalf to be read in parliament. This will happen within the next month.

What is ME/CFS?
A chronic illness involving overwhelming ongoing fatigue, ME/CFS is often triggered by a viral illness. The condition causes a variety of symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.

Who are ANZMES? ANZMES has been providing information, building awareness, funding research, and advocating for people with ME/CFS for the past 42 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.

See for more information.

Petition: Reclassify ME/CFS to Disability

Join us

Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) is calling for ME/CFS to be reclassified as a disability.

We urge you to to pledge your support for this change.

People with this debilitating condition face a barrier to support under the current classification of “chronic illness” and as a result experience poor quality of life and health inequity. With increasing numbers of people with Long COVID (LC) being diagnosed with ME/CFS the existing support through nonprofit organisations is set to become unmanageable, with case numbers still rising.

With the new Whaikaha – Ministry of Disabled People still in development ANZMES sees that this is a timely opportunity to move forward with this long overdue change.

ANZMES President, Fiona Charlton says, “it is vital for ME/CFS and LC that this access is improved. “Many people have symptoms that are so severe that they struggle with daily tasks like showering, making a meal and are bedbound or require a wheelchair. “This growing community of chronically ill people deserve better treatment and urgently need more access to financial support and health services with acknowledgment that their illness is disabling.”

Photo Credit: Martyna Reynolds
Photo Credit: 123rf

Despite the symptoms of ME/CFS meeting many of the definitions for disability, the illness is not categorised as a disability in New Zealand for the purpose of health-related funding and support.

The Human Rights Act 1993 states that disability can be defined as:

Physical disability or impairment: physical illness: psychiatric illness: intellectual or psychological
disability or impairment: any other loss or abnormality of psychological, physiological: or anatomical
structure or function: reliance on a guide dog, wheelchair, or other remedial means: the presence in the
body of organisms capable of causing illness.

Reclassification will lead to real improvements in quality of life for those in need. Some people with ME/CFS become ill and never return to their pre-illness capabilities – this makes the condition life-long. ME/CFS patients require home help, housing support, financial support, and counselling access. Many people, following COVID-19 infection, are being diagnosed with ME/CFS and also require ongoing support services.

Photo Credit:
Photo Credit:

Reclassification of ME/CFS to disability would result in:

  • legitimisation and validation of a person living with ME/CFS as a disabled person, and a protection of their rights as a disabled person,
  • easier access to governmental financial support and ministry services,
  • increased access to social services,
  • access to need assessments as a recognised disabled person,
  • access to home-help support and services, including mobility aids, and grants for home modifications for wheelchair use,
  • access to free immunisations on a voluntary basis,
  • increased level of care and support through social services and educational institutions.

What is ME/CFS?
A chronic illness involving overwhelming ongoing fatigue, ME/CFS is often triggered by a viral illness. The condition causes a variety of symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.

Who are ANZMES?
ANZMES has been providing information, building awareness, funding research, and advocating for people with ME/CFS for the past 42 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 urges you to join us in supporting this petition by signing and sharing with your networks:

Severe ME Day

August 8th

August 8th marks Severe ME Day.

It is a day to remember those we’ve lost to #severeME and to be the voice for those with #ME/CFS who are too sick to speak, too sick to leave their beds, to sick to leave their homes.

25% of people with ME/CFS are housebound or bedbound. Some spend decades in darkened rooms with noise cancelling headphones, no electronics, little to no social interaction. Noise, light, chemicals, and temperature changes can all induce severe pain.

Today we act as the voice, to build awareness for this cruel, debilitating disease. We seek to educate the general public and we advocate continuously for better treatment, better diagnostic tools, and better government support and access to home help services.

ANZMES backs World ME Alliance position

– no endorsement for Lightning Process for ME

The Associated New Zealand Myalgic Encephalomyelitis Society (ANZMES) supports the new position paper on the Lightning Process by the World ME Alliance and does not endorse the Lightning Process for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). 

The Lightning Process is a programme loosely based on concepts of neuro linguistic programming (NLP) and cognitive behaviour therapy (CBT) that is set up commercially and currently marketed as a cure for ME/CFS. This claim is not backed by scientific evidence and ANZMES shares the view of the World ME Alliance that the promotion of this programme is likely to do harm.

The National Institute for Health and Care Excellence (NICE), in the UK, revised their guidelines for the diagnosis, treatment, and management of ME/CFS stating that the lightning process should not be used as a treatment and they no longer recommend CBT. These changes reflect a shift from an outdated perspective that ME/CFS was a psychological condition and follows evidence from over 200 studies showing poor efficacy for this treatment approach.

ANZMES President, Fiona Charlton says, “there is a growing body of evidence that shows that ME is driven by physiological changes not psychological ones and telling people that they can talk themselves out of this condition, within three days, could be very harmful.

“We know that if people with ME ignore their symptoms and push themselves this can make things worse, sometimes to the point of needing hospital care.”

ANZMES agrees with the World ME Alliance who highlight in their statement that people with ME/CFS are vulnerable to exploitation due to a lack of effective treatment where programmes like the Lightning Process are just filling this void.

People living with Long COVID are also being drawn into this treatment as this is now an extension of their claims to cure ME/CFS.

Other concerns with the Lightning Process include a bias in efficacy studies, including conflicts of interest, a reported secrecy where participants are told not to speak about the programme or their symptoms and a level of shame and guilt for those who do not recover within the three days of treatment.

Charlton says, “we want to ensure that if we are endorsing a treatment for ME that robust evidence supports efficacy and this is just not the case with LP. 

“What we do know is that a treatment approach that is focussed around symptom management is shown to help with the relapsing nature of ME.”

ANZMES acknowledges that neurological symptoms, such as depression and anxiety can be a part of ME/CFS and may benefit from supportive therapies but people have the right to unbiased, impartial information when being offered these treatments.


The Lightning Process was developed and trademarked by British osteopath and hypnotherapist Phil Parker.

ANZMES has been providing information, building awareness, funding research, and advocating for people with ME/CFS for the past 42 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.

Position Statement World ME Alliance

NICE Guidelines

Contact ANZMES for more information

Learn From ME Press Release

What Do You Know About ME?

World ME Day Asks You To Learn More

Post-infectious diseases like Myalgic Encephalomyelitis (ME) and Long COVID are more common and much more serious than most people realise. These illnesses can devastate the lives of those affected and their whānau, and there is no effective treatment or cure.

The inaugural World ME Day on 12 May 2022 aims to close this knowledge gap. Initiated by the World ME Alliance, the day is an urgent call for better recognition of ME/CFS, Myalgic Encephalomyelitis /Chronic Fatigue Syndrome, for better training of health professionals and for more research funding.

This year’s theme of World ME Day is #LearnFromME and in New Zealand the day will be marked by an online Learn From ME video event hosted by the Associated New Zealand ME Society (ANZMES). The event features presentations from New Zealand experts in biochemistry, immunology, and general medical practice. It also includes interviews with people living with ME/CFS and Long COVID. The video presentations will remain available for viewing after 12 May.

The presentations will show that despite persisting knowledge gaps, people with ME/CFS and ME/CFS experts have accumulated a wealth of knowledge that could help improve the quality of life for those affected by ME/CFS and similar diseases like Long COVID – but only if we #LearnFromME.

World ME Day: a call for better recognition of ME

ME/CFS is as common as it is disabling. It is estimated to affect 17 to 30 million people across the world with 20,000 to 45,000 in New Zealand. The majority are unable to work or study and a quarter are so seriously ill they are housebound or bedbound, a heavy personal and economic burden. Yet ME/CFS remains under-researched and poorly understood, allowing misinformation to flourish. This has resulted in ME/CFS patients being either dismissed and ignored or prescribed treatments that are unhelpful at best and harmful at worst.

A particularly little-known phenomenon is post-exertional malaise (PEM) which refers to an unusual and disproportionate increase in symptoms after minor activity. PEM is not known to occur in other illnesses but it is the cardinal feature of ME/CFS – without PEM an ME/CFS diagnosis cannot be made – and PEM is also experienced by many people with Long COVID. PEM is best managed by creating an individualised routine of rest and carefully paced activities. People with ME/CFS have a wealth of practical PEM management experience to share with those wanting to #LearnFromME.

Kate was diagnosed with ME 4 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. Four 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: a call for better training of health professionals

The key roles of PEM and pacing are reflected in recent updates to clinical guidance around the world. On World ME Day healthcare professionals are encouraged to familiarise themselves with one of these. In New Zealand the regional DHB HealthPathways websites provide up to date clinical advice. Internationally the National Institute for Health and Care Excellence (NICE) in the UK, and the CDC (Centers for Disease Control and Prevention) and Mayo Clinic Proceedings in the US, are excellent resources. Continuing medical education credits are available for New Zealand health professionals who want to #LearnFromME.

GP Cathy Stephenson states “ME affects 10s of 1000s of kiwis and their families every day, yet evidence-based management and support is almost impossible to access. As a health sector, we need to upskill rapidly – Long COVID appears to be remarkably similar to ME, and when the predicted tsunami of it reaches our shores, we will struggle to cope unless we act now.”

“In the future it would be wonderful to have specialist centres set up to provide the very best care to patients with ME and Long COVID, but for now my hope is that every health provider in primary care is able to offer a safe, affirming, evidence based approach to managing this debilitating condition.”

“If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, its Pacing. Above all else. Pacing.”

World ME Day: a call for more research funding into ME and other post-infectious diseases

The coronavirus pandemic has impacted the ME/CFS community in two ways. More people with ME/CFS are more seriously ill after their already poor health and quality of life deteriorated further following a COVID-19 infection. And more people are being diagnosed with ME/CFS as increasing numbers of Long COVID patients meet diagnostic criteria for ME/CFS.

It remains unclear if post-viral ME/CFS and post-viral Long COVID are one and the same disease or two very similar ones. What is clear is that both groups desperately need effective treatments and ultimately a cure. Much more funding is needed for rigorous biomedical research to build on what we can already #LearnFromME.

Emeritus Professor Warren Tate and his research team at Otago University have contributed substantially to our improved understanding of post-viral illness.

Tate says “It was exciting to find molecular signatures in the immune cells of ME/CFS patients associated with dysfunctional energy production and showing instability in the epigenetic code that controls precise production of all our proteins, giving a clear indication of the biological basis for the illness.”

“Long COVID and ME/CFS have very similar molecular signatures for proteins connected to immune dysregulation, inflammation and energy production.“

“The fact that ME/CFS is so functionally debilitating, and is life-long in most cases, puts huge social and financial burdens on those affected, their families and their communities, and blunts the potential of highly productive people to contribute value to our society.”

World leading researchers for ME/CFS and Long COVID here in New Zealand are hampered by inadequate funding. With funding, these researchers can contribute to improving the quality of life for people with ME/CFS: Emeritus Professor Warren Tate, Biochemist, University of Otago; Dr Lynette Hodges, Exercise Physiologist, Massey University; Dr Anna Brooks, Immunologist, University of Auckland.

World ME Day: LearnFromME

Watch the World ME Day events hosted by ANZMES on May 12th on

Visit the Learn From ME page on Facebook to read real-world lived experience of New Zealanders with ME/CFS, and for evidence-based information. This page is a collaborative initiative between the regional and national ME/CFS organisations:
Complex Chronic Illness Support.
ME/CFS Support (Auckland).
ME/CFS Canterbury.
MEISS Otago.
ME Awareness.
Rest Assured Respite Trust.

Find out more about ME/CFS or to take action to support World ME Day by visiting:

Learn From ME Event

2022 World ME Day ANZMES Press Release

2022 World ME Day 12th May ANZMES Press Release

Will you #LearnFromME this May 12?

May 12 is World ME Day. This year, the Learn From ME global campaign acknowledges that people with ME/CFS are experts of their own illness experience. They have a lot to offer those experiencing Long COVID through insights, treatment plans that work and understanding of what it is like to live with a chronic illness.

What can the Long COVID community learn from ME/CFS?

  • That post-viral syndromes are real. Some people recover, others don’t and this is determined by the unique physiological makeup of each individual. They can learn to pace themselves, to not give up, and to have hope with new research being released. They can learn to advocate for themselves and they will learn and know that the ME/CFS community supports them.
  • Resting is key to being able to achieve activities. Pacing is vital for sustaining periods of activity. Pacing is a common management tool for people with ME/CFS. When you apply pacing to your life, you are taking control of how you spend your time – finely balancing activity with rest to prevent overexertion. For people with ME/CFS overexertion can result in what is known as post-exertional malaise (PEM) – whereby a relapse of symptoms can cause the person to be bed bound for days unable to care for themselves, or they experience an exacerbation of core symptoms for several weeks. This can happen to people with ME/CFS not only with physical activity but mental/cognitive activity too.

“I learned how to pace the hard way.” Says Jane, a person with ME/CFS. “After repeatedly over-doing it by trying to get things done on one of my good days and then crashing and being bed bound for days after, I slowly learned how to pace my activities. Now I will put a load of washing on and then rest. I’ll peg the washing out and then rest. I can then start on the vacuuming. The key is to learn that I can vacuum one room one day and another room another day. I don’t have to get it all done at once. Balancing between activity and rest means I can sustain activity for longer without causing a relapse of my symptoms.”

Such post-exertional malaise and inability to maintain activity is said to be as a result of malfunctions in the energy production system. Research by Dr. Lynette Hodges from Massey University who has studied PEM extensively shows significant differences in exertion capabilities of people with ME/CFS when compared to healthy controls.

Kathy says “I learned that what I can achieve on one day, I may not be able to achieve on another day. I usually have to spread activity out across the week, it means having an appointment on a Monday and resting on a Tuesday. I have to recover from the exertion of getting showered, dressed, fed, before driving to my appointment, and then the cognitive exertion required to function at that appointment, before getting myself back home. I used to go to the gym 7 days a week, sometimes twice a day, and work full-time, travel, and play sports on the weekend. I lived a full life, now I’m lucky if I can manage to do one thing in a week!”

Photo Credit: Martyna Reynolds

Recently someone experiencing a COVID-19 infection, talked to her ME/CFS friend “I had to rest for an hour after pegging the washing out. It made me think of you, I don’t know how you deal with this every day, year in year out.”

Edith says: “I’ve learned to not give up. I have hope that with new research being released we will no longer face stigma, that everyone will know this disease is real, and the research proves this.”

By sharing their experiences, it is hoped that the general public, friends, family/whānau, and medical professionals and institutions gain valuable insights about this often maligned condition. For decades there have been misconceptions about this disease. Despite the World Health Organisation classifying it as a neurological disorder in 1969, and adding it as a “post-viral syndrome” in 2019, many health professionals still follow the misguided and unfounded school of thought that it is psychological or psychiatric in nature.

The growing body of biomedical research from around the world and here in New Zealand demonstrates otherwise. Emeritus Professor Warren Tate has identified a biological basis for ME/CFS symptoms. He has shown a dysfunction in the mitochondria (energy-making function of the cell) in people with ME/CFS and disturbed widespread physiology, highlighting the complex chronic nature of this illness. He has also recently submitted a paper regarding the biological processes that facilitate relapse and sustain ME/CFS. 

The ME/CFS community has had to be vocal, has had to stand up to misinformation, has had to demand funding for research, and has had to beg for ministry support. 

Recently retired, general practitioner, and long-time advocate for people with ME/CFS, Dr. Ros Vallings says “It is so important to get a correct diagnosis according to specific recognised criteria. That way a treatment plan can be established which is most likely to help manage symptoms.” ME/CFS is an umbrella term for a cluster of debilitating symptoms that result from malfunctions in multiple bodily systems. Despite the person often appearing ‘well’ these debilitating symptoms include but are not limited to: incapacitating exhaustion, post-exertional malaise, pain, sleep disturbances, cognitive and gastro-intestinal issues, and orthostatic intolerance (severe light-headedness when standing).[1]

In NZ there are at least 25,000 people living with ME/CFS – that’s approximately 1 in every 250 adults and 1 in every 134 youth.[2] It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV)[3]. The illness affects all genders, races and ethnicities. It affects children, those at university still studying, those just entering the workforce, mums and dads juggling home and work and people at the peak of their careers, right up to the elderly who already have other struggles. Some will recover after some months or years, but those who are still sick two years after onset are likely to suffer this illness for the rest of their lives. Dr Sarah Dalziel ANZMES medical advisor says “There are around 3,000 young people in New Zealand with ME/CFS and life can change dramatically for them when they get this illness. “Adolescents with ME/CFS identify that remaining engaged in education and therefore the ability to pursue future aspirations is crucially important. This requires a lot of support and education for teachers and parents to help children design an achievable plan for schooling.” 

With omicron rife in New Zealand, yet another post-viral syndrome is looming. Of all COVID-19 cases, an estimated 10-30% may develop what is commonly referred to as Long COVID.[5] Many of these will go on to receive an ME/CFS diagnosis too. With over 1 million COVID-19 cases in NZ, that means roughly 100,000-300,000 people could become so ill that they can no longer work, attend school, and for some it will mean a lifetime being bedbound unable to care for themselves, or housebound, unable to maintain consistent activity. This will have huge economic, political, and psychosocial impacts. The government has largely ignored the high percentage of people with ME/CFS in New Zealand who are unable to work or finish school because of their illness. They will not be able to ignore the tide of illness that is threatening to reach our shores very soon. Post-viral syndromes are catastrophic not only in the personal lives of those who are ill, but to their families, community, and have far-reaching economic impacts, it will over-burden our healthcare systems, and may result in more people having to rely on government benefits to survive. It is time to wake up. It is time to invest money in research. It is time to #LearnFromME.

May 12 marks the international Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, on Florence Nightingale’s birthday (as it is thought she developed ME/CFS after an infection contracted during the Crimean war). Each year on this day ANZMES (the Associated New Zealand ME Society) seeks to provide education and build awareness, as well as advocate for and support those with ME/CFS and their families. This year, the theme for World ME Day is Learn from ME. In conjunction with the World ME Alliance, ANZMES seeks to demonstrate the volume of knowledge that the ME/CFS community can provide. 

The Learn From ME Event on May 12, hosted on the ANZMES website provides presentations from Professor Warren Tate, Dr. Anna Brooks, Dr. Rosamund Vallings, and includes two interviews of the lived experience.Resources are available for patients, carers, teachers and health professionals through the Associated New Zealand ME Society (ANZMES) at

ANZMES AGM – Saturday 6th November 2021

All are welcome to ANZMES AGM to be held via ZOOM this year, Saturday 6th November starting at 1pm.

Featuring guest speaker Dr Ros Vallings speaking on the latest research and Dr Sarah Dalziel speaking about pain management. Dr Warren Tate will also be on hand to answer any of your questions.

Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).Details below 🙂

Meeting ID: 966 8892 8362

Passcode: 572263

ME/CFS Day May 12, 2021

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

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

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

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

Severe fatigue with post-exertional malaiseFatigue
Cognitive dysfunction (brain fog, memory lapses)Brain fog
Gastrointestinal issuesGastrointestinal issues
shortness of breathshortness of breath
* this is not an exhaustive list of symptoms

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

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

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

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

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

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

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

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

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

How can you help?
5 ways:

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

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

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


4 Lobby your local MP to demand that:

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

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

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

[1] Kerr, J. (2020).

[2] and

[3] For a more comprehensive list visit: and



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