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World ME Day 2023 – Press release

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

New CME accredited series for health professionals

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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.

To receive the series in your inbox you can sign up online at: https://forms.gle/ntH67hkz2S5Jj8xt7

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.

World ME Alliance calls on WHO Director General to recognise ME alongside Long COVID

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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.

2022.10.19-World-ME-Alliance-letter-to-Dr-Tedros-Ghebreyesus-re-Long-Covid-and-ME




ANZMES President speaks to One News

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ANZMES President Fiona Charlton speaks to journalist Dewi Preece about the impact of ME/CFS in her life and the lives of many New Zealanders living with this debilitating illness, and why it is so important for ME/CFS to be recognised as a disability.

Professor Warren Tate echos these sentiments, speaking about why the current classification is insufficient to provide the support required for people with ME/CFS, and particularly those in the severe to very severe category.

ANZMES President Fiona Charlton
Prof Warren Tate in his lab
Emeritus Professor Warren Tate

Read the full article, or watch the TV1 news story video here:

https://www.1news.co.nz/2022/09/25/chronic-fatigue-syndrome-i-lost-my-thirties-to-this-illness/

Petition read today

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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.

https://www.rnz.co.nz/national/programmes/thepanel/audio/2018859359/the-panel-with-mark-sainsbury-and-amy-carter-part-two (minute 9:18).

Photo Credit: Marcus Aurelius on Pexels.

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

https://www.rnz.co.nz/national/programmes/afternoons/audio/2018859472/getting-chronic-fatigue-recognised-as-an-disability

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

https://www.rnz.co.nz/national/programmes/checkpoint/audio/2018859506/long-covid-adds-strain-to-chronic-fatigue-support-services

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):

https://95bfm.com/bcast/the-wire-w-casper-september-20-2022

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

Should chronic fatigue syndrome be classified as a disability? – Expert Reaction

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

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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: glide.com.au

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 www.anzmes.org.nz/petition-disability for more information.

Petition: Reclassify ME/CFS to Disability

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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: FitnessForThisAbility.com
Photo Credit: Glide.com.au

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: https://www.parliament.nz/en/pb/petitions/document/PET_125649/petition-of-associated-myalgic-encephalomyelitis-society

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