Countdown Priority Assistance

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.”

ME/CFS Day May 12, 2021

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

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

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

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

ME-CFS *Long COVID *
Severe fatigue with post-exertional malaiseFatigue
Cognitive dysfunction (brain fog, memory lapses)Brain fog
Gastrointestinal issuesGastrointestinal issues
shortness of breathshortness of breath
Fevers/ChillsFevers/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]:

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

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

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

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

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

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

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

How can you help?
5 ways:

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

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

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

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.


[1] Kerr, J. (2020). https://doi.org/10.3390/biom10111484

[2] http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects and https://www.omf.ngo/covid-19-to-me-cfs-study/

[3] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[4] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

[5] http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects

Awareness Day: Media/Press Release

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. 

ME-CFS [5]Long COVID [6]
Severe fatigue with post-exertional malaiseFatigue with post-exertional malaise
Cognitive dysfunction (brain fog, memory lapses)Brain fog
Gastrointestinal issuesGastrointestinal issues
shortness of breathshortness of breath
Fevers/ChillsFevers/Chills

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.

#myalgicencephalomyelitis #MECFS #LongCOVID #PressRelease #MediaRelease #Fibromyalgia #postexertionalmalaise #millionsmissing #chronicillness #chronicillnesssupport #chronicillnesscommunity #autoimmune #chronicillnesswarriors #endMECFS #openmedicinefoundation #longCOVIDalliance #longhaulers #thelonghaulandME #MEandCovid19 #MEandCOVID #SolveMECFS #WarrenTate #RosVallings #AnnaBrooks #ANZMES #MECFSexperts #nationaladvisoryforMECFS


[1] https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

[2] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[3] Open Medicine Foundation estimates https://www.omf.ngo/covid-19-to-me-cfs-study/

[4] https://www.medicalnewstoday.com/articles/long-covid#definition

[5] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[6] https://www.pharmaceutical-technology.com/comment/long-covid-complications/

[7] https://www.europarl.europa.eu/news/en/agenda/briefing/2020-06-17/22/myalgic-encephalomyelitis-more-funding-needed-for-research-into-complex-illness

[8] (http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects)

[9] https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

[10] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[11] Jason, et. al, (2008) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

[12] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

Experts discuss Long COVID and ME/CFS

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.

To read the full article visit: https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

Dr. Anna Brooks, University of Auckland
Photo Credit: University of Auckland
Professor Warren Tate, University of Otago
Photo Credit: University of Otago

#LongCOVID #thelonghaulandME #MECFS #COVID19 #millionsmissing #ANZMES #WarrenTate #DrAnnaBrooks #chronicillnesssupport #postviralsyndrome

ME/CFS on TVNZ’s The Checkup

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.

https://www.tvnz.co.nz/shows/the-check-up

Prof. Tate talks long-haul COVID

Professor Warren Tate discusses long-haul COVID-19 and its similarities with ME/CFS on Nine to Noon, on Radio New Zealand.

https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018782946/understanding-long-haul-covid19

New research shows ME/CFS is not psychosomatic

News articles regarding Professor Warren Tate’s research that shows physiological and biochemical changes and dysregulation in people with ME/CFS compared to healthy controls. Read more here:

https://www.stuff.co.nz/life-style/well-good/300181308/kiwi-researchers-prove-chronic-fatigue-syndrome-is-not-psychosomatic

https://www.nzdoctor.co.nz/article/undoctored/proof-chronic-fatigue-syndrome-not-psychsomatic

Photo Credit: University of Otago.

Prof. Tate: ME/CFS is not psychosomatic

University of Otago researchers have proved in two studies that chronic fatigue is not psychosomatic, despite the widely held belief.

The Panel on RNZ speak to Emeritus Professor Warren Tate, from the University of Otago’s department of Biochemistry.

https://www.rnz.co.nz/national/programmes/thepanel/audio/2018776634/chronic-fatigue-is-not-psychosomatic-study