The Hāpai Access Card was created as a means to communicate the access requirements for people living with disabilities.
The definition of disability in New Zealand used by the government is any “self-perceived limitation in activity resulting from a long-term condition or health problem lasting or expected to last 6 months or more and not completely eliminated by an assistive device.”
In order to cover a wide range of conditions and impairments Hāpai Foundation defines disability as: “a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities.”
The Hāpai Access Card is designed to increase access in the community, increase participation by people with disabilities in the community, and to normalise access for people with disabilities. It is aimed at being a bridge between the business and disability community. It follows the Social Model of Disability in which the understanding is that people are only disabled by barriers in society not by their impairment or difference. For example barriers can be physical such as buildings not having ramps or accessible toilets or attitudes towards difference such as assuming that people with disabilities can’t do certain things.
The Hāpai Access Card provides an easy way for the card holder to show a business the barriers they face, and for the business to respond.
The card costs $30 for 3 years. To get the card a person has to show they have a disability and have their barriers assessed. This is done by a GP, or registered NGO.
The card can feature 9 icons representing the barriers that people face (difficulty queuing/standing, wheelchair, difficulty with distances, urgent toilet access, assistance dog, assistance person, visual information difficulty, audible information difficulty, other relevant needs.
This card is therefore a mechanism by which customers can alert business staff to the barriers they may face when purchasing a product or experiencing a service. This enables businesses to address and remove barriers for a more inclusive shopping experience.
Currently the businesses registered are largely in the Canterbury region, but the goal is to introduce Hāpai Access card nationwide.
Pathways to Improvement is a step-by-step guided program for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Environmental Sensitivities. This program was created by Dr. Eleanor Stein, who has 30 years of both personal and professional experience with these difficult-to-treat biomedical diseases/illnesses.
According to Dr. Stein “After years of illness and failed attempts at improvement, many with ME/CFS, FM and ES lose hope that improvement is possible. Not so. It is possible to improve your energy, sleep, thinking and pain, to be more joyful, more resilient and to be able to enjoy more of the things you love.”
About Eleanor Stein MD, FRCP(C)
“As a medical specialist in psychiatry, I have dedicated my practice to ME/CFS, FM and ES for the past 20 years. I got into this field after developing ME/CFS, FM and MCS in 1989. My health symptoms limited my ability to work and function every day for over 28 years. Then about three years ago many of the symptoms, including disabling fatigue, lifted. Why do I think this happened?
Over the past seven years I have been intensively studying and practicing methods of change based on neuroplasticity. Many people, including myself, who stabilized their health with self-management are reporting improvements with these new strategies. The science of neuroplasticity teaches us how to create change. By sharing what I have learned with you, I hope your pathway to improvement will be faster than mine.
People tell me that the experience of being in a group with others who “get it” can be life changing.”
The online course consists of 8 fortnightly 1.75 hour live zoom sessions plus 1 Q&A session starting May and October each year). The goal of the course is to provide tangible practical steps that people with ME/CFS, FM, & ES can do to experience improvement in their lives through symptom reduction and enhanced quality of life. Topics include:
Biology of Change – which covers neuroplasticity aka the ability for the brain to retrain/learn/change
Diagnosis
Sleep
Energy and activity
Diet
Pain
Environment
Emotions
For each topic there are several short videos and an exercise that is meant to be carried out over the two weeks prior to each live session. The exercise is a form of self-monitoring to increase self-awareness, identify patterns or triggers, and provide insight into areas that if altered, may result in change to symptoms and the lived experience. For example, turning off electronics an hour before bed can improve sleep. There is also a manual “Let your light shine through” written by Dr. Stein.
The live sessions involve a short recap by Dr. Stein of the most important points from the course videos. There are breaks and opportunities to interact with other course attendees in breakout rooms with questions to answer and discuss together. The 3 moderators then present a summary of discussions back to the whole group. Finally the chat is opened up for questions which Dr. Stein answers.
An ANZMES executive committee member attended the May 2021 online course so that ANZMES has a first-hand experience with it. We do not recommend treatments however we believe Dr. Stein to be a reputable health professional. We believe this program may be ideal for the newly diagnosed, for those who have not previously come across symptom management techniques, or for those that have tried a few things and feel stuck and are seeking a fresh take. Dr. Stein has a wealth of knowledge and experience, having worked closely in group and 1-on-1 sessions with people with ME/CFS for over two decades, and teaching self-management strategies that worked for her. Dr. Stein’s empathy, insights, and expertise are invaluable.
NOTE: ANZMES does not benefit from registration in the course.
ANZMES does not take responsibility for the outcomes experienced by those who choose to partake in the Pathways to Improvement online program.
ANZMES does not recommend any treatments and it is stressed that the diagnosis of ME/CFS relies on clinical description/presentation and on exclusionary medical testing. It is imperative to seek qualified medical advice for evaluation. Any advice, either explicit or implied, is not intended to replace qualified medical advice. ANZMES does not accept any responsibility for any treatment undertaken by readers of this website or for any error or omission in connection with information shared here.
The World Health Organization (WHO) has announced a definitive clinical case definition for what has been known as Long COVID, to help doctors recognise and diagnose the estimated 1 in 3 people affected by this post COVID-19 ongoing disease.
The WHO definition of Long COVID is: “Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others which generally have an impact on everyday functioning. Symptoms may be new onset, following initial recovery from an acute COVID-19 episode, or persist from the initial illness. Symptoms may also fluctuate or relapse over time. A separate definition may be applicable for children.”
Science Media Centre gets Expert Reactions to the case definition. Read what Dr. Anna Brooks and Emeritus Professor Warren Tate have to say, here:
Good news for online shoppers at Countdown, ANZMES has set up a priority assistance code for all of our members to use. Please see the instructions below:
“Countdown supermarkets have been very busy these past few weeks and there has been high demand for our online shopping service. We are about to announce how we will be working to prioritise vulnerable customers who want to use our online shopping service. We know that your members will be some of these customers and we want to help you help them. Please ask your members to register for Countdown online Shopping at shop.countdown.co.nz. After that they will need to complete this form:https://shop.countdown.co.nz/…/content/priority-assistance
Please enter the code ANZMES in the field where it asks for a Super Gold Card number so we know they are a member of your organisation and we can work to filter them through the process as quickly as possible. If they have a Super Gold Card they can enter that number too, after the code.Once we’ve processed their application they will receive an email to confirm that they have been accepted into the Priority Assistance group. What this will mean is that when they shop online they will see dedicated delivery time slots on our website that others can’t see subject to availability. These delivery times will be reserved for use by our Priority Assistance customers. There aren’t many time slots at the moment due to heavy demand but we are working to grow capacity and there should be more availability over the next week or so. Priority Assistance customers will still be subject to the same limits as other online shoppers and everything else about the service will remain the same, as it is for other shoppers. All deliveries will be Contactless which means our drivers will just place the groceries on the doorstep, knock on the door and go. They will also send you a text message to let you know your groceries have arrived. If your members have further questions please ask them to visit our website and review the COVID-19 Frequently Asked Questions or have them ask Olive, our Virtual Assistant, that will pop up to chat on our website. They can find Olive at https://www.countdown.co.nz/If they need help with the Priority Assistance application process please call our dedicated number 0800 477 655 or email us at priority@countdown.co.nz. If they need help with anything else they can call our Customer Care team on 0800 40 40 40 but please note that they are very busy and the wait times can be quite long so please only call if it is absolutely essential. We hope this small step will help your members in the coming days as we all go through this experience together.”
May 12th is the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day.As we mark this day each year, we highlight how you can support the millions of people globally (and at least 25,000 here in NZ) who suffer from ME/CFS. We mark this day on Florence Nightingale’s birthday, because it is thought that she developed ME/CFS after an infection contracted during the Crimean War.
ME/CFS is a serious, disabling, long-term disease which affects multiple bodily systems (immune, endocrine, neurological and autonomic). [1] The World Health Organisation classified ME/CFS as a neurological disease back in 1969. Despite this, ME/CFS has often been misunderstood, stigmatised as psychosomatic, and underfunded. Today we have a much clearer understanding of the biological basis for the disease through research from the likes of Harvard, Stanford, Cornell, and DePaul universities in the USA, and our very own Emeritus Professor Warren Tate of the University of Otago.
This year, with COVID-19 still present globally, we also want to direct attention to the estimated 25-35% of cases [2] who have not recovered from the virus. Those people who are still unwell 12 weeks after the expected recovery period, are classed as having “Long COVID” and some go on to receive a diagnosis of ME/CFS as well.
There are similarities between ME/CFS and Long COVID (some symptoms overlap):
ME-CFS *
Long COVID *
Severe fatigue with post-exertional malaise
Fatigue
Cognitive dysfunction (brain fog, memory lapses)
Brain fog
Gastrointestinal issues
Gastrointestinal issues
shortness of breath
shortness of breath
Fevers/Chills
Fevers/Chills
* this is not an exhaustive list of symptoms
This is not surprising because a large percentage of those with ME/CFS, develop it after not recovering from a virus such as Epstein Barr/Mononucleosis, SARS-CoV, etc., or from other infectious illnesses such as Lyme disease (Mayo Clinic, 2020).
What does it mean to have ME/CFS? The list above is not exhaustive. Those with ME/CFS also experience significant deep muscular pain and can also experience a varying degree of symptoms that link to dysfunction of distinct systems in the body [3]:
ME/CFS is a chronic illness, meaning it is long term.
It can be classed as having three distinct levels of symptom severity [4]:
Mild – at least a 50% decrease in pre-illness activity but may still be able to achieve part-time work and activities
Moderate – mostly housebound (can’t attend work/school or do normal activities)
Severe – bedbound and dependent on help with all daily care (this occurs in approximately 25% of all ME/CFS cases).
ME/CFS knows no bounds – it affects all ages, ethnicities, genders and socioeconomic groups. At this point in time there is no cure, but there is research going on to develop a suitable treatment based on previous research into root cellular causes and dysfunction. Currently Prof. Tate is working on comparing the molecular similarities between ME/CFS and Long COVID patients recruited through the practice of collaborating physician Dr. Rosamund Vallings, in order to not only understand the underlying pathophysiology (root causes and malfunctions) but also to discover potential treatments. [5] Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.”
How can you help? 5 ways:
1 Educate – This awareness day, please take time to learn more about ME/CFS and Long COVID by visiting links suggested in this article, by perusing the rest of the ANZMES website and joining our Facebook page: If you or someone you know has ME/CFS share your personal stories with others, on social media, and take time to listen to others’ stories.
2 Support – on May 12th wear BLUE to raise awareness and show support for people with ME/CFS, their families and caregivers as well as the researchers who study ME/CFS. Please use social media to spread information about ME/CFS – share this article, and post photos of you and your family and friends wearing blue. Use hashtags #ISTANDforMECFS #MECFSUnity #ANZMES #BLUEforMECFS #millionsmissing #thelonghaulandME #MEandCOVID #solveMECFS
3 Share our posters and memes and this blog on social media, with friends and family, with your local GP and healthcare providers, and lets show all those living with ME/CFS and Long COVID that they are not alone, they are heard and supported.
Posters:
4 Lobby your local MP to demand that:
Evidence-based health guidelines are used by all government agencies to ensure accurate information about ME/CFS for timely diagnosis and management and access to necessary services (including home help and supported living payments)
Dedicated research funding is set aside for treatment development
ME/CFS is reclassified as a disability so that those unable to work due to the severity of their illness are able to gain access to the services they need.
5 Join our organisation to receive lobbying letter templates, information sheets, and access to the latest news and developments.
We look forward to seeing your presence on social media this May 12th for ME/CFS International Awareness Day 2021. Thank you.
May 12 marks the international Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, on Florence Nightingale’s birthday (as it is thought she developed ME/CFS after an infection contracted during the Crimean war). Each year on this day ANZMES (the Associated New Zealand ME Society) seeks to provide education and build awareness, as well as advocate for and support those with ME/CFS and their families. This year, with COVID-19 still present globally, attention must also be on those diagnosed with Long COVID. Long COVID will present new challenges. Many of those challenges have already been faced by the ME/CFS community.
Myalgic Encephalomyelitis (ME/CFS) is a serious long-term illness causing disabling symptoms exacerbated by both mental and physical exertion [1]. Despite the person often appearing ‘well’ there are debilitating symptoms that include but are not limited to: incapacitating exhaustion, post-exertional malaise, pain, sleep disturbances, cognitive and gastro-intestinal issues, and orthostatic intolerance (severe light-headedness when standing). The illness affects all genders, races and ethnicities. It affects children, those at university still studying, those just entering the workforce, mums and dads juggling home and work and people at the peak of their careers, right up to the elderly who already have other struggles. Some will recover after some months or years, but those who are still sick two years after onset are likely to suffer this illness for the rest of their lives.
In NZ there are at least 25,000 people living with ME/CFS – that’s approximately 1 in every 250 adults and 1 in every 134 youth. It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV) [2]. The COVID-19 virus (SARS-CoV-2) has resulted in a post-viral syndrome for an estimated 25-35% of all cases [3]; a syndrome similar in symptomatology to ME/CFS. Those still unwell twelve weeks after onset [4], are classed as having Long COVID and some go on to receive an ME/CFS diagnosis too. This means the prevalence of ME/CFS in NZ and worldwide is increasing.
There is currently no cure for ME/CFS. However researchers around the world, including Cornell, Stanford and Harvard Universities in the USA, are working to understand the disease, find a diagnostic test and develop more treatments. Despite this, research is woefully underfunded. In the last year The European Union has called for more funding [7]. Researchers here in New Zealand, including a team led by the Rutherford Medal winner Emeritus Professor Warren Tate of the University of Otago, have to rely on donations from people with ME/CFS, their families and organisations such as ANZMES. One such study also funded by Brain Research NZ is to assess the pathophysiological similarities between ME/CFS and those diagnosed with Long COVID [8]. Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.” [9]
The increase of people with ME/CFS and Long COVID has far-reaching repercussions. For society this means a loss of available people in the workforce and further burdens to the public health system. For the individual it means increased medical costs and a loss of salary. Between 40-81% of those with ME/CFS are unable to maintain employment due to fluctuating, disabling symptoms [10]. A decrease in social contact can result in social isolation, loneliness, and diminished quality-of-life [11]. Even those with ‘mild’ symptoms experience at least a 50% decrease in pre-illness activity [12]. Imagine being unable to meet your friend for coffee at the local café because you don’t even have the energy to shower and dress. Or consider being housebound, not just for a few weeks (like many kiwis experienced during lockdown) but for decades or a lifetime. Imagine the teenager who cannot physically attend school and has to complete coursework from bed. Or picture not being able to play with your children or grandchildren, and missing out on seeing them in school plays and sports. This is the reality for many with ME/CFS.
This year, on the International ME Awareness Day (May 12th), please think about those with ME/CFS and Long COVID, who face ongoing isolation and difficulties associated with living with a chronic illness.
Resources are available for patients, carers, teachers and health professionals through the Associated New Zealand ME Society (ANZMES) at www.anzmes.org.nz.
In a newly published article by Science Media Centre, two New Zealand experts discuss Long COVID and ME/CFS.
Dr. Anna Brooks, an immunologist from University of Auckland and Professor. Warren Tate of University of Otago answer questions regarding Long COVID, the similarities to ME/CFS, and what they would like to see occur in New Zealand in relation to research and government action.
The Checkup is an eight episode series airing on TVNZ.
EPISODE 7 will be on air at 8 PM, TV1 on the 1st March 2021. This episode includes stories : Colour Blindness, Activated Charcoal , Chronic Fatigue, Placebo and why do onions make us cry? It can also be found on TVNZ ondemand after it has aired.
Dr. Ros Vallings features in this episode, discussing ME/CFS.
