All are welcome to the ANZMES AGM to be held via ZOOM this year, Saturday 18th November starting at 1pm.
Featuring guest speaker Dr Sarah Dalziel talking about attending the 3rd ME/CFS International Conference 2023: RID – Research Innovation and Discovery.
Simply click the link below to join (if joining from mobile, it may ask you to download the Zoom app).Details below
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.
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.
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 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.
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.
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
ANZMES President, Fiona Charlton spoke alongside Emeritus Professor Warren Tate from the University of Otago, and patient advocate Tom Harris to Kathryn Ryan on Nine to Noon on Radio New Zealand this morning.
The petition to reclassify Myalgic Encephalomyelitis to a disability is currently with the Health Select Committee, who are due to provide their recommendations to parliament in the coming months. This follows an oral submission to them by ANZMES on May 3rd 2023, a written submission presented in October 2022, and the petition with 6,444 signatures, submitted to parliament in September 2022.
ANZMES created this petition to draw attention to the fact that the system is not working for people with ME/CFS (pwME). Many fall through the cracks, many rely on whānau to care for them. Those who aren’t lucky enough to have family to care for them, experience post exertional malaise crashes regularly just trying to make a meal or do laundry. This means they’re in a constant state of unwellness with a myriad of over 100 symptoms. You can learn more about post exertional malaise on ANZMES World ME Day page.
Put simply:
ME/CFS fits the definition for disability BUT DOES NOT fit the criteria to access disability support services.
Those same support services are available under Long Term Support – Chronic Health Conditions BUT People with ME/CFS DO NOT fit the NASC* criteria to access them.
The system is not working for people with ME/CFS.
*NASC – Needs Assessment Service Coordination.
ME/CFS fits all definitions for disability created by the United Nations, The World Health Organisation, The Human Rights Act 1993, Statistics NZ, and the NZ government’s own definition (copied below). A disability is an impairment — physical, intellectual or sensory — that lasts for more than 6 months and limits your ability to carry out day-to-day activities.
pwME experience physical, cognitive, and sensory impairments. The condition for most, is chronic, for some it is lifelong. To be diagnosed with ME/CFS, one must experience at least a 50% reduction in ability to function (compared with pre-illness capacity).
ME/CFS fits the definition of disability. ME/CFS is a disability.
What would it mean to reclassify? A change in classification would be a lifeline to dedicated support and wider acknowledgement that this illness is disabling, providing fairer access to established support and care.
Being classified as a disability demonstrates the government understands how truly disabling this condition is. It legitimises ME/CFS as a physiological disease, which would foster the standardising of healthcare for pwME. Legitimising ME/CFS as the disability it is, should override and negate outdated opinions and treatments. It would provide pwME protection of rights as a disabled person.
It would ensure the government upholds its legal obligation to adhere to the United Nations (UNCRPD) Report (September 2022) which states that ME/CFS should be included in disability policies and supported by disability services.
It will enable pwME to fit into the criteria for NASC assessment for home help services. Access to services equates to intervention that promotes recovery or at the very least improvement in symptom management. When a person is constantly exerting beyond their energy capabilities, they crash. This is a health issue. NASC assessments are not conducted by the Ministry of Social Development, they are conducted through hospitals and the healthcare system. It is a healthcare issue.
ANZMES President, Fiona Charlton states “Members of Parliament are elected by the people, for the people. It is a democratic government’s role to ensure all policies, procedures, and programmes meet the needs of all New Zealanders. People with ME/CFS are New Zealanders. Yet, their needs are not being met. There is no-one in parliament representing us. We have to advocate for ourselves, yet who is listening? Who in parliament will stand up for and advocate for the needs of pwME? Who will ensure our needs are met?”
In 2012, following a petition by ANZMES Executive Committee member, Wendy Matthews, the then Health Select Committee made the recommendation to reclassify ME/CFS as a disability.
This was NOT implemented by government.
Fiona Charlton states “We have hope that the Health Select Committee will once again make the recommendation to reclassify ME/CFS as a disability. However this time, we also urge these committee members to use their roles within parliament to ensure the government implements the advice.”
ANZMES invite members of parliament to speak with them. ANZMES has the knowledge, expertise, and lived experience. ANZMES has world-renowned clinicians on the executive committee and medical team, and researchers like Emeritus Professor Warren Tate are available for discussions.
ANZMES current Royal NZ College of General Practitioners (RNZCGP) CME (continuing medical education) accredited series: Know M.E. is freely available to all health professionals seeking to understand the biomedical, physiological nature of ME/CFS and evidence-based management strategies.
The information is available for a considered, evidence-based response from parliament to meet the needs of people with ME/CFS. ANZMES offers solutions in its written submission (October 2022), and written report submitted to Health and Disability Ministers and Commissioners in July 2022. You can view the oral submission here: anzmes-speaks-to-parliament.
ANZMES looks forward to the recommendations from the Health Select Committee in the coming months.
ANZMES is dedicated to continually advocating, supporting, educating, and funding research for pwME.
Who are ANZMES? The Associated New Zealand Society for ME/CFS (ANZMES) have been providing information, awareness for ME/CFS, funding research, and advocating for people with ME/CFS for the past 43 years (since 1980). As the national advisory body for ME/CFS in New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME/CFS voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership. ANZMES is a RNZCGP registered provider for continuing education. Health professionals can earn CME/CPD credits with ANZMES latest education programme – Know M.E. – a video podcast and news series featuring up-to-date, evidence based research and information on ME/CFS and Post COVID Conditions.
World ME Day asks you to learn about the broken energy system in ME/CFS
If you’ve never heard of post-exertional malaise (PEM) you’re not alone. But for people living with ME/CFS or long Covid understanding PEM is crucial to managing their illness. World ME Day on May 12 is an opportunity to increase your understanding of this little-known phenomenon.
Post-exertional malaise (PEM) is something that everyone with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) experiences. So what is it? Put simply, PEM is a debilitating and abnormal response to normal activity.
People with ME/CFS and long COVID have what is called an energy envelope. This is the amount of energy they have on any given day to function. Research and experience shows that if a person expends an equivalent amount of energy to the amount they have available they will reduce the symptom flares they experience.
When people with ME/CFS and long COVID push to do more than their energy envelope can cope with, the severity of their symptoms increase. This period of reduced functionality and exacerbation of symptoms typically starts within 12 to 48 hours after the activity or exposure and may last for days, weeks, or may also be permanent.
When PEM hits, people report existing symptoms increase, and that new ones appear including brain fog (executive functioning), flu-like symptoms (sore throat, muscle pain, increased fatigue); muscle weakness; increased sensitivity to noise, light or touch; pain; sleep problems.
How much and what type of exertion triggers PEM is different for each person. Triggers can include:
physical (walking around the mall or folding the washing);
cognitive (thinking, talking, reading)
processing emotional events (both positive and negative stressors)
sensory overload (noise, light, touch, smell, temperature, vibrations such as in vehicles)
physiological processes (digestion, temperature regulation, fighting infections)
orthostatic (sitting or standing upright vs lying down)
multi-tasking (even if individually each activity is within their Energy Envelope, e.g. talking while walking, or thinking while in a noisy environment)
Leading ME/CFS researcher Dr Lynette Hodges, Exercise Physiologist, Massey University, says “Individuals with ME/CFS are not lazy or deconditioned. Our research has shown physiological changes for those with ME/CFS. Both planned exercise and even simple activities of daily living can cause PEM.”
PEM is best managed by creating an individualised routine of rest and carefully paced activities within the individual’s current energy envelope. GP Cathy Stephenson states “If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, it’s Pacing. Above all else. Pacing.”
Kate was diagnosed with ME 5 years ago after 20 plus years of health challenges triggered from a viral illness. Before this she was hardly ever sick, a school prefect, and played high level sport representing New Zealand for Water Polo. In 2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She suffered with crushing fatigue that did not improve after a full night’s sleep and had to give up work, sports and her social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and other activities.
She also experienced constant body pain, fluctuating headaches, neurological problems resulting in impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she had to learn to work within a very small energy envelope.
Five years on, Kate has made what is known as significant progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week. She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports are not fulfilled and she is accepting that she may never reach these and other dreams she has.
World ME Day: LearnFromME – “ME: the disease where pushing harder can make you sicker.”
Follow the Learn From ME page on Facebook on May 12th to follow the World ME Day campaign. This page is a collaborative initiative between the regional and national ME/CFS organisations:
Today, May 3rd the Associated New Zealand Myalgic Encephalomyelitis Society Incorporated provided an oral submission to the Health Select Committee, which was live streamed.
You can watch it here:
This video on YouTube features only the section of proceedings that relates to the ANZMES petition and oral submission. Watch the full video on the Health Select Committee’s Facebook page (with ANZMES submission at minute 39:10): https://fb.watch/khpmwwAaJR/. This video has been shortened for YouTube with permission obtained by the administration of the Health Select Committee.
Due out next week, for ME/CFS Awareness month, is a special episode of Know M.E. video podcast featuring ANZMES president Fiona Charlton, Executive Committee Member Wendy Matthews, Emeritus Professor Warren Tate, and RNZCGP’s Fellow Dr. Sarah Dalziel. These four discuss the oral presentation, how they think it went, and what we hope to achieve through this petition and consideration by the Health Select Committee.
The speech by ANZMES is presented here:
Tena katou katoa. Members of parliament, thank you for the opportunity to present further testimony in support of our petition. I am Fiona Charlton, president of ANZMES and I’m joined today by Emeritus Professor Warren Tate and RNZCGPs Fellow Dr. Sarah Dalziel who can answer your questions.
We understand that you have invited representatives from Whaikaha and Ministry of Health to also speak today.
In the written submission by Whaikaha, they recognise that ME fits the criteria for disability. But the responsibility lies with other government agencies to provide services. There is nothing dedicated to the unique needs of pwME.
The Ministry of Health states that the system doesn’t require people with ME (pwME) to be classed with a disability to access services. This unfortunately lacks understanding of what happens in practice, what pwME experience when trying to access services, and what the reclassification would mean for pwME. We invite representatives to meet with us to discuss ways in which the government can better support pwME.
Key points for you to please understand and consider:
ME is a disability. Post Exertional Malaise – the cardinal symptom of ME causes symptom exacerbation which is often misunderstood and makes levels of disability difficult to assess without adequate knowledge and education of the condition.
When you understand PEM you understand that pwME have to choose between making a meal and attending an appointment outside of the home. They have to choose between taking a shower and doing laundry. It is a constant battle between tasks and the energy capacity to function enough to carry out those tasks.
ME is a disability because of this energy limited capacity. It is a condition that impairs the ability to function on a regular basis both cognitively and physically and this frequently confines people to their home and beds, causing unemployment and an inability to perform basic tasks of daily life.
ME/CFS is a disability. There is no known cure. For many it is lifelong.
ME is a disability. It fits the definition, Whaikaha has also submitted that ME fits the definition.
The United Nations report to the government recommends that people with ME/CFS should have access to the disability support system and be included in disability policies and programs.
We created this petition to draw attention to the fact that the system is not working for pwME. Many fall through the cracks, many rely on whanau to care for them. Those who aren’t lucky enough to have family to care for them, experience PEM crashes regularly just trying to make a meal or do laundry. This means they’re in a constant state of unwellness.
Yet the eligibility criteria are inconsistent throughout the country resulting in a postcode lottery for health care. Besides the direct practical ramifications of this, it is a health equity issue.
The inconsistent criteria mean that in practice, the majority of pwME are unable to access servicesthat the Ministry of Health state is available.
People with ME are theoretically entitled to support under the chronic illness classification, however they’re NOT receiving it in practice.
The Needs Assessment and Service Coordination (NASC) organisation who assess home help eligibility confirm that ME patients are NOT considered for assessment. The closest equivalent disease, Multiple Sclerosis (MS), is accepted for assessment, despite evidence that MS has lower prevalence and less associated functional disability than ME.
The vast majority of pwME do not meet the criteria for home help under the Long Term Support – Chronic Health Conditions designation. Which is targeted at the over 65, those with very high needs, or for conditions such as diabetes.
Even those with ME with very high needs that do meet the criteria, get insufficient care and the care role falls to family. For example a 22 year old with severe ME who is bed bound, unable to feed herself, unable to toilet herself, bathe herself, she’s unable to speak and on a liquid diet. She’s unable to leave her darkened room due to extreme sensitivities to light, sound, touch. Her mother is now her fulltime carer, leaving her nursing job, reducing the family’s income, yet they’ve only been granted 22 hours of care per week from an outside professional and currently only 11 hours of this can be supplied due to staff shortages. That mother, who has given up paid employment to care for her daughter, is only given 11 hours break per week.
We call for standardised nationwide criteria and policies that recognise the severely debilitating nature of this condition. We call for funding. Currently there is no dedicated funding invested by the government for the wellbeing of people with ME/CFS, including no funding for research, despite its increasing prevalence.
In 2012 the Health Select Committee recommended the reclassification of ME to disability to the government after hearing our first petition. This recommendation was not implemented by the government.
We urge you to also make this recommendation, but be active in ensuring this results in real, practical change for pwME. With recognition and access to services they deserve.
Early intervention promotes recovery. Access to support promotes improved outcomes. It can help prevent further disability, further worsening of the condition which often requires hospitalisation. Access to home help enables a person with ME to potentially do a work from home job, if they can choose to use their limited energy on paid employment rather than making a meal, doing laundry, getting the children off to school with a packed lunch.
It’s not just about home help.
Being classified as a disability demonstrates the government understands how truly disabling this condition is. It legitimises ME and provides protection of rights as a disabled person. It will enable them to fit into the criteria for NASC assessment and home help services.
We recognise that the government has done some work for people with long COVID (LC). The advisory produced guidelines. There are long COVID clinics getting ready to open in 4 main regions of Aotearoa. But people experiencing PEM (which those with LC do just like pwME) will find it very difficult to make it to appointments. ANZMES and Complex Chronic Illness Support and other ME organisations have the solutions. We’re already helping pwLC and ME, so come to the table and discuss with us how best to supply the services required. We have the lived experience, the knowledge, and the expertise.
A change in classification would be a lifeline to dedicated support and wider acknowledgement that their illness is disabling, providing fairer access to established support and care.
We urge you to stand with us and help pwME.
Photo Credit: Action for ME
Photo Credit: Martyna Reynolds
If ANZMES had more than the allotted 10 minutes, we would have made more valid points such as:
The criteria for Home Help currently exclude pwME as sufficiently disabled, despite significant disease burden and limited functionality.
In order to be diagnosed with ME/CFS a person must be significantly impaired in terms of functioning in daily life, such as work or school, however the condition fluctuates in severity, with periods of remission and relapse.
ME is widely misunderstood: despite the increasing awareness and research proving the biomedical basis of the illness it is still often dismissed as a psychological condition or malingering, resulting in a lack of support from society and official support networks – further compounding the disability.
The most fundamental insight from research into ME/CFS and now also Long COVID is our understanding of Post Exertional Malaise and the importance of pacing. When supported adequately and no longer pushing through symptoms, people are able to prevent their illness from worsening and this approach is now part of best practice health care recommendations. Many doctors, welfare assessors, insurance assessors don’t adequately understand PEM, leading to denial of needed services or financial support and may demand pwME undertake ineffective or harmful therapies. Education is key here but this is a long-term strategy and a disability classification would send a strong signal and help people right now.
The World Health Organisation’s International Classification of Functioning, Disability, and Health (ICF) model establishes three levels of human functioning: (1) at the level of body or body part (body structures and functions domain), (2) the whole person (activities domain), and (3) the whole person considered in a social context (participation domain). In this classification, disability implies a certain degree of dysfunction at one or more of these same levels: impairments, activity limitations, and participation restrictions, respectively.
ME/CFS meets all levels of this definition of disability and in fact meets all definitions including those of the New Zealand government. Several symptoms contribute to disability for people with ME/CFS including fatigue, cognitive dysfunction, pain, sleep disturbance, post exertional malaise and autonomic dysfunction. These can have a significant impact on daily life, for example dysfunction of the autonomic nervous system can mean that a person is dizzy or faints when they go from sitting to standing.
An estimated 40,000 people suffer with ME/CFS in NZ and now we add to this 30,000 with unresolving long COVID.
Our surveys show that despite the fact that at least 25% of people with ME/CFS are severely ill and bedridden and 60% are severely debilitated and housebound, they are unable to access funded care set out for this kind of disability, even when their doctor has referred them.
Our surveys also show that people with ME/CFS, in NZ, feel ignored, isolated and their quality of life is low and this is largely due to a lack of support.
Quality of life is significantly lower compared with conditions such as cancer, depression, heart disease, diabetes, and rheumatoid arthritis. Many of these conditions have larger funding pools and patients can often more easily access home help.
A disability research programme in the UK, known as DRILL, found that “people with a wide range of different diagnoses share a lived experience of chronic illness that goes far beyond ‘fatigue’.” The research group developed the term ‘energy impairment’ to describe this experience and Energy Limiting Conditions as a broad cohort that experience disability. They include Fibromyalgia, a range of neurological, musculoskeletal, auto-immune and respiratory diseases. Their work is worth reading to gain insight into their perspective on the experience of energy impairment as a disability, in particular they state that fatigue is seen as being at the bottom of the disability hierarchy despite being very impactful on day to day activities like showering. For people with energy impairment, inequalities stem from this kind of attitude and practice of disbelief and invalidation that diminishes their lives.
ANZMES has provided a written report (to accompany the petition) with a series of solutions, which begins with reclassification and includes dedicated funding, a contract for wraparound services and the creation of a tailored support structure with a tiered system that recognises the varying degrees of disability experienced by people with ME/CFS. We also recommend that we align our health care approach with the latest research and recommendations by implementing a multi-disciplinary pilot.
From a person with ME/CFS: Getting up to the bathroom feels like a marathon. Every part of my body hurts and I feel as if my limbs are weighed down by something. My thoughts are clouded and escape me like they are lost in a thick fog. Today, I will choose between having a shower and making a meal before my legs give way altogether. The chores pile up around me and I feel as though I am being swallowed alive by this illness. I watch life pass me by in a blur and cling to the hope that tomorrow will be better.
Together we stand and ask to be seen, to be heard, and to finally be supported.
Home help is declined for an individual with impairments, if there is a family member who can do the chores for them. This means that family members have to take on care roles, instead of a professional coming into the home to carry out those duties. It changes the family dynamic when someone, usually unqualified in healthcare, has to bathe a family member, cook for them, help them to the toilet, or to the lounge because they can’t walk unaided.
When asked by the Health Select Committee if reclassifying would help people with ME/CFS, Whaikaha representatives stated that it would enable pwME to gain access to services, such as home help support. Martin Chadwick, Ministry of Health representative also stated that reclassification would enable NASC assessments and recognition for the condition.
We look forward to due consideration by the Health Select Committee and await their report, in which, we hope that they make the recommendation to reclassify ME/CFS as a disability, and put forward the solutions that ANZMES have presented. This is the first step. It is then up to the government to implement the recommendations, and this step is long over due.
ANZMES 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.
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.
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.
