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ANZMES: A #GlobalVoiceForME on World ME Day 2024

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As we approach World ME Day on May 12th, 2024, ANZMES joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME). This significant day coincides with the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases, underscoring the critical need to address this global health crisis.

In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. Today, we estimate that at least 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, ANZMES proudly stands alongside World ME Alliance members across the globe, collectively amplifying support for initiatives that seek to address the multifaceted impact of ME on individuals and communities alike.

No Cure, No Universal Treatment

One of the harsh realities we face is that there is currently no cure for ME, nor universally effective treatments. Individuals grappling with ME often endure not only the physical toll of the illness but also the stigmas that accompany it. It is imperative that we, as a global community, come together to address these gaps in understanding, research and treatment.

Building a #GlobalVoiceForME 

This World ME Day, ANZMES will be joining the call upon individuals, organizations, and countries to become a #GlobalVoiceForME. As a collective, we increase our power. By uniting our voices, we can influence the trajectory of ME research, treatment, and support.

ME knows no borders, and neither should our efforts to combat it. It is crucial that countries around the world work collaboratively to address this crisis. By fostering international cooperation, sharing research findings, and building recognition in every nation, we can pave the way to mitigate the devastating effects of ME.

Taking action for World ME Day 2024: In the coming months, ANZMES and the World ME Alliance will be announcing actions you can take to create change on May 12th, 2024. A big focus will be building relationships with health ministries of different nations, as they have the power to advocate with the World Health Organization. Your involvement will be vital to this effort, so keep your eyes peeled for more info coming soon.

Alongside this, we are developing tools for you to use, like our much-loved custom poster maker, a new film, graphics, posters, and more. We can’t wait to share these with you!

In the meantime:

  • Spread the Word: Use your social media platforms to share information about ME. Let your friends, family, and followers know that World ME Day 2024 is coming on May 12th, and that you’ll be asking them to join as a #GlobalVoiceForME!
  • Educate Yourself: Knowledge is a powerful tool. Learn about ME in your country through  ANZMES or reach out to others online to become part of the global ME community. Your voice matters, and you can contribute to breaking down misconceptions and stigmas surrounding the illness.

As we prepare for World ME Day 2024, we hope you will stand united with ourselves and the World ME Alliance, raising our voices to be heard around the globe. By growing the #GlobalVoiceForME, we can accelerate change, fostering a future where those affected by Myalgic Encephalomyelitis find hope, understanding, and ultimately, a cure. Together, let’s turn awareness into action and transform the landscape for individuals living with ME.

ANZMES 2023 AGM Report

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The ANZMES AGM was held at 1pm on the 18th November 2023 via ZOOM online meeting.

This was ANZMES 43rd AGM of caring and supporting people with ME/CFS and their whanau and carers, as well as disseminating information, resources, and education to them, the general public, and medical professionals. ANZMES is looking at new initiatives as part of our strategic planning for the next year, and will continue to fund vital research that benefits the ME/CFS community as more physiological evidence is discovered and more understanding of the condition is brought to the fore.

Fiona Charlton (President) opened the AGM Meeting and the President’s report outlined some of ANZMES activities throughout the year. 

Highlights included;

  • This year we are proud to have launched a Grant and Scholarship Programme for postgraduate students and academic researchers. This will be an annual fund for ME/CFS and long COVID study. Two exciting projects are proceeding thanks to the ANZMES Grants of $25,000 each
  • ANZMES launched Know M.E. Series for health professionals providing a monthly newsletter packed full of evidence-based information and research. The associated video podcasts are publicly available. This series is CME accredited by the Royal NZ College of GP’s, and ANZMES is a Registered Provider for continuing medical education. This series features a newsletter covering a different topic each month. Know M.E. also includes a podcast which is publicly available on Spotify, iHeart Radio, Google Podcasts, and iTunes/Apple. The video version is publicly available on YouTube. Each month features special guest interviews speaking about M.E. topics.
  • In May 2023 ANZMES launched two one-page resources for the diagnosis and management of ME/CFS and long COVID in primary care.
  • In early November 2022 we held a long COVID educational event for health professionals. We had over 150 registrants, including GPs, nurses, nurse practitioners, clinic managers, med students, physiotherapists, OTs, and more. Our speakers talked about post exertional malaise and how to avoid it, described the similarities and differences between Long COVID and ME/CFS, how to diagnose both conditions, how to treat through allied health, and the effects of COVID and Long COVID in Māori and Pasifika communities.
  • Dr Sarah Dalziel attending the the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery and provided a summary of the conference.

All present committee member’s have continued their term and were voted on for the upcoming year. The appointments are as follows:

President – Fiona Charlton

Vice President – Ange Robinson

Treasurer – Amy Ma

Reviewer – Alan Shanks

Executive committee – Anna Brooks, Suzanne Duffy, Wendy Matthews, Steve Murray, Gabby Shortt and Ros Vallings.

Heather Wilson who has been on the ANZMES committee for well over 20 years has now stepped down. A very, very special thanks go to Heather for her hard work and time spent on the committee and time spent helping people and their whanau, it is much appreciated. After the AGM was announced closed a presentation was played of Heather’s farewell which was held online and in person in Dunedin on Friday 3rd November 2023.

Dr Sarah Dalziel and Ken Jolly both continue as ex officio Medical Advisor’s to ANZMES. We would like to sincerely thank Sarah and Ken for their time and effort to help answer any queries we may have in the medical field. 

Membership Fees for 2024 have remained unchanged, they are set at:

  • $10.00 for Full membership
  • $5.00 for Concessionary membership
  • $5.00 for Family members
  • A free Helping Hand option will be available for people who suffer severe financial hardship.

After the AGM had finished, Dr Sarah Dalziel gave a presentation on her attendance at the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery. 

YouTube links to the AGM attached below
AGM 2023 – 1 of 3
AGM 2023 – 2 of 3
AGM 2033 – 3 of 3

Press Release – ANZMES Awards Academics 25K Grants to Boost ME Research

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For immediate release – 18/09/2023

Two New Zealand researchers have been chosen to receive the Associated New Zealand Myalgic
Encephalomyelitis Society (ANZMES) annual grant of $25,000 to undertake vital research into
increasing understanding of Myalgic Encephalomyelitis (ME, also known as Chronic Fatigue
Syndrome), in Aotearoa.

ANZMES, the National Advisory on ME, launched the new grant and scholarship programme for
postgraduate students and academic researchers this year – aimed at supporting those
interested in researching ME and long COVID. With six funding opportunities available, ANZMES
encouraged applications from those seeking to undertake research that furthers understanding,
treatment, or prevention of ME and long COVID, including two $25,000 grants and four $5,000
scholarships to support research and study costs.


The 2023 Grant recipients are:
● Principal investigator: Dr. Nicholas Bowden, Research Fellow, Department of Women’s and
Children’s Health, University of Otago (pictured below. Photo credit: University of Otago).


Co investigators: Keith McLeod, Associate Principal, Kōtātā Insight.
Dr. Rosamund Vallings, retired GP, Howick Health and Medical
Centre.
Emeritus Professor Warren Tate, Department of Biochemistry,
University of Otago.
Professor Barry Taylor, Department of Women’s and Children’s
Health, University of Otago.
Francisca Anns, PhD Candidate, COMPASS Research Centre,
University of Auckland.


The study will investigate the health, labour market, and social service use of people with
ME, in NZ, through a population study.
Dr. Bowden says, “we are excited and grateful to receive this grant to undertake what we believe
is an important piece of research, providing foundational population-level evidence on health,
labour market, and social service outcomes for those with ME/CFS in Aotearoa/New Zealand for
the first time.”


● Principal investigator: Dr. Lynette Hodges, Senior Lecturer School of Sport, Exercise and
Nutrition, Massey University, Registered Clinical Exercise Physiologist (pictured below.
Photo credit: Massey University).


The study will investigate activity and energy management and
the hallmark symptom post-exertional malaise (PEM), in people
with ME through an observational study that assesses exertion
during normal daily activities of living, such as doing dishes or
laundry.

Dr. Hodges says, “I am so thrilled to learn that my research
application was chosen. I hope that this research will be able
to be of benefit to those with ME/CFS. As a Clinical Exercise
Physiologist, I am keen to help people live their best lives and hope that this study will develop a
better understanding of how activities of daily living affect the physiology of those living with
ME/CFS.”

Dr. Bowden and Dr. Hodges will both receive the $25,000 Grants through their respective
universities, to carry out their research projects.

ANZMES President, Fiona Charlton, says, these investments will help facilitate a crucial source of
New Zealand based research, furthering our understanding of the disabling condition.

“We are really pleased by the calibre of the work proposed by both recipients.
“With Dr. Bowden’s work, for the first time we will have a foundational study that offers insight into the lives and experiences of people with ME in Aotearoa.

“We understand the burden of disease from an international research perspective but New
Zealand based studies are lacking.

“Research into PEM and activity management will also be invaluable for both patients and health
professionals and will have implications for long COVID management and recovery.

“While we did not receive any scholarship applications, we encourage postgraduate students to
consider their Masters/PhD topics now, for next year’s funding round. In programs with relatively
low costs, scholarships can be used to help pay fees or study and living expenses,” says Charlton.

ME is a complex, debilitating and often misunderstood medical condition and although millions of
people suffer with the illness worldwide, including a significant population in New Zealand, there
is remarkably little research or funding available.

This ANZMES funding programme was made possible by the generous support of members.

The Grant was awarded by ANZMES on the recommendation of their Grants and Scholarships
Subcommittee.

Next year’s funding applications open May 31st.
Visit anzmes.org.nz for more information, grant regulations, and application forms.


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 we?
We are the National Advisory on ME in Aotearoa/New Zealand. With four decades of knowledge
and experience, we are the trusted leaders in ME education, representation, and research. Our
expertise comes from a reputable medical team of advisors, including a world renowned expert
and MNZM recipient, a fellow of the Royal NZ College of General Practitioners (RNZCGP) and a
network of academic researchers, clinicians, and representatives from the ME community. The
executive committee comprises experts in their respective fields for governance, policy,
leadership, representation, and education.

Always a trail-blazer, it was the first ME charity of its kind in the world, established in 1980, as
ANZMES, to provide support, information dissemination, and representation, achieving past
outcomes through dedication, passion, time, and knowledge of lived experience. Today, the
organisation leads as a Royal New Zealand College of General Practitioners (RNZCGP) Continuing
Medical Education (CME) Registered Provider, proud funder of vital research, and steward of the
community voice.
We continue to disseminate evidence-based information nationally, and represent the ME voice
globally as a founding member of the World ME Alliance through advocacy and leadership.
ANZMES latest education programme for health professionals – Know M.E. – is a video podcast
and news series featuring up-to-date, evidence based research and information on ME and Post
COVID Conditions.

Press Release – ANZMES welcomes HSC recommendations for improved access to disability services for people with ME/CFS.

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For immediate release – 22/08/2023

Petition response: ANZMES welcomes Committee recommendations for improved access to disability services for people with ME/CFS

ANZMES, the National Advisory on Myalgic Encephalomyelitis (ME), has welcomed the Health Select Committee’s (HSC) response to its petition delivered in September 2022, calling on the Government to reclassify ME as a disability.

The Health Select Committee presented its report to parliament on 17th August 2023, sending a strong message acknowledging ANZMES petition to reclassify ME – also known as Chronic Fatigue Syndrome (CFS) – as a disability with the recommendation that eligibility criteria for disability services be amended.

The 10 page HSC Report recommends that the Government take note stating “we understand that ME/CFS meets the Government’s definition of a disability. We therefore, encourage Whaikaha to consider amending its eligibility criteria to enable people with ME/CFS to access Whaikaha-funded disability support services.”

The Report also acknowledged concerns raised by ANZMES that the current classification and system is flawed with complicated assessment processes and policies and disparity between regions causing access inequality.

ANZMES President Fiona Charlton says the acknowledgement and recommendations are “a step in the right direction.”

“The struggle is real for so many people with ME and improving access to Whaikaha-funded support services could give so much relief to them.”

The HSC Report acknowledged that the eligibility criteria differ between Whaikaha and Te Whatu Ora-funded services, resulting in inequitable access.

The Report also states that a person does not require a classified disability to access health services, however in practice ANZMES has found that many with ME/CFS are denied help, despite the obvious need. ANZMES understand that support needs to be prioritised but at present, due to a misconception around the severity of the illness and the lack of functionality that results, many are seen as low on the priority scale.

ANZMES plans to continue to discuss this with the government and Whaikaha and would like them to consider working together to improve current assessment pathways and streamline the process to reduce access inequity across the country.

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.

People with ME want to see the actual implementation of these recommendations. Practical help is urgently needed for this growing under-supported, disabled community that could lead to a better prognosis and better quality of life.

To view the full report:

HSC-2022-Final-report-Petition-of-ANZMES

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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.

ME ANZMES logo with albatross bird representing support

Who are ANZMES?

The Associated New Zealand ME Society (ANZMES) has been providing information, awareness for ME, funding research, and advocating for people with ME for the past 43 years (since 1980). As the National Advisory on ME in Aotearoa/New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME 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.

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For more information contact

info@anzmes.org.nz

BenefitME

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CivicTheme demo logo

BenefitMe is a new website aimed at helping people find what benefits they can receive.

There are lots of Work and Income benefits for people who need help in Aotearoa New Zealand, but it can be hard to know which ones you can get. BenefitMe helps you find out what you’re eligible for and what happens if things in your life change.

BenefitMe is a community effort to put some power back into the hands of the public, so anyone can find the support and services they’re legally eligible for and be more able to engage from a position of confidence with government departments.

Payments currently supported:                                     

  • JobSeeker    
  • Sole Parent Support                                       
  • Disability Allowance
  • Accommodation Supplement 
  • Emergency Benefit (see Discretionary benefits)

BenefitMe is an initiative by the Digital Aotearoa Collective (DAC), a civil society group committed to addressing injustice and improving wellbeing in Aotearoa New Zealand. Click the link to find more about BenefitMe

World ME Day asks you to learn about the broken energy system in ME/CFS – PRESS RELEASE

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PRESS RELEASE – for immediate release

World ME Day asks you to learn about the broken energy system in ME/CFS

If you’ve never heard of post-exertional malaise (PEM) you’re not alone. But for people living with ME/CFS or long Covid understanding PEM is crucial to managing their illness. World ME Day on May 12 is an opportunity to increase your understanding of this little-known phenomenon.

Post-exertional malaise (PEM) is something that everyone with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome)  experiences. So what is it? Put simply, PEM is a debilitating and abnormal response to normal activity.

People with ME/CFS and long COVID have what is called an energy envelope. This is the amount of energy they have on any given day to function. Research and experience shows that if a person expends an equivalent amount of energy to the amount they have available they will reduce the symptom flares they experience.

When people with ME/CFS and long COVID push to do more than their energy envelope can cope with, the severity of their symptoms increase. This period of reduced functionality and exacerbation of symptoms typically starts within 12 to 48 hours after the activity or exposure and may last for days, weeks, or may also be permanent.

When PEM hits, people report existing symptoms increase, and that new ones appear including brain fog (executive functioning), flu-like symptoms (sore throat, muscle pain, increased fatigue); muscle weakness; increased sensitivity to noise, light or touch; pain; sleep problems.

How much and what type of exertion triggers PEM is different for each person. Triggers can include:

  • physical (walking around the mall or folding the washing);
  • cognitive (thinking, talking, reading)
  • processing emotional events (both positive and negative stressors)
  • sensory overload (noise, light, touch, smell, temperature, vibrations such as in vehicles)
  • physiological processes (digestion, temperature regulation, fighting infections)
  • orthostatic (sitting or standing upright vs lying down)
  • multi-tasking (even if individually each activity is within their Energy Envelope, e.g. talking while walking, or thinking while in a noisy environment)

Leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist, Massey University, says “Individuals with ME/CFS are not lazy or deconditioned. Our research has shown physiological changes for those with ME/CFS. Both planned exercise and even simple activities of daily living can cause PEM.”

PEM is best managed by creating an individualised routine of rest and carefully paced activities within the individual’s current energy envelope. GP Cathy Stephenson states “If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, it’s Pacing. Above all else. Pacing.”

Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.

She also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.

Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.

World ME Day: LearnFromME – “ME: the disease where pushing harder can make you sicker.”

Visit the World ME Day information from ANZMES on https://anzmes.org.nz/worldmeday2023/

Follow the Learn From ME page on Facebook  on May 12th to follow the World ME Day campaign. This page is a collaborative initiative between the regional and national ME/CFS organisations:

ANZMES (Associated NZ ME Societies)
Complex Chronic Illness Support
ME Support
MECFS Canterbury
MEISS Otago
ME Awareness NZ
Rest Assured Respite Trust

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

ME/CFS Reclassification Petition – ANZMES set to speak to parliament

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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.

For more information contact

info@anzmes.org.nz

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

ANZMES backs World ME Alliance position

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– 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.

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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

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