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Notes from the IACFS conference 2022
ANZMES has made this PDF version available to those who wish to download for their own use.
World ME Alliance calls on WHO Director General to recognise ME alongside Long COVID
On Wednesday 12th October Dr Tedros Ghebreyesus, Director General of the World Health
Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastation that Long COVID is
causing around the world, and sets out five key elements of a plan to drive change.
It is vital that the impact of Long COVID is recognised at the highest levels, and the World ME Alliance
congratulates Dr Ghebreyesus on this stance.
However, as more research is undertaken, it is becoming clearer that a large proportion of those
with Long COVID now meet the criteria for an ME/CFS diagnosis. The WHO must recognise this as efforts to find treatments and a cure continue.
The World ME Alliance (of which ANZMES is a founding member) has written to Dr Ghebreyesus calling on him to meet with representatives.
Dr Ghebreyesus has previously committed to reaching out to ME experts, and we hope that through collaborative efforts we can learn from ME, and ensure that progress for people with Long COVID doesn’t leave the millions already suffering with ME behind.
Read the full letter from the World ME Alliance and its 19 members below.
ANZMES President speaks to One News
ANZMES President Fiona Charlton speaks to journalist Dewi Preece about the impact of ME/CFS in her life and the lives of many New Zealanders living with this debilitating illness, and why it is so important for ME/CFS to be recognised as a disability.
Professor Warren Tate echos these sentiments, speaking about why the current classification is insufficient to provide the support required for people with ME/CFS, and particularly those in the severe to very severe category.
Read the full article, or watch the TV1 news story video here:
https://www.1news.co.nz/2022/09/25/chronic-fatigue-syndrome-i-lost-my-thirties-to-this-illness/
Petition read today
The ANZMES petition to reclassify ME/CFS as a disability was read in parliament at 2pm Tuesday 20th September 2022. It is now with the select committee, and ANZMES will provide a written submission to the committee before the deadline of 7th October.
Radio New Zealand provided coverage on The Panel with guest Kate Waterworth from AUT speaking about the petition with panelists Mark Sainsbury and Amy Carter.
https://www.rnz.co.nz/national/programmes/thepanel/audio/2018859359/the-panel-with-mark-sainsbury-and-amy-carter-part-two (minute 9:18).
Professor Warren Tate spoke with Charlotte Ryan on the Afternoon show:
ANZMES President Fiona Charlton discussed the petition with Nick Truebridge on Checkpoint:
Dr. Tanisha Jowsey, of University of Auckland discusses the need to classify ME as a disability with Casper on The Wire at 95b FM. (minute 48:29):
On Science Media Centre, Prof. Tate, Kate Waterworth, and Dr. Tanisha Jowsey provide their expert opinion on whether ME/CFS should be reclassified:
Scoop published the ANZMES press release and so did Voxy.
It even got a mention on George FM.
Have you heard coverage of the story? Send us an email and tell us where you heard or read about the petition to reclassify ME/CFS as a disability.
Reclassification update
The Ministry of Health (MoH) has not provided an official response to ANZMES petition for ME/CFS to be reclassified as a disability.
ANZMES are waiting for an official response rather than relying on comments provided to the media.
We have advocated for reclassification for many years, and this is not the first petition. ANZMES will continue to petition the government until change is achieved.
Following previous advocacy efforts, the MoH position to not reclassify was due to budgets and allocation of funds. It has been about numbers rather than the people affected.
ANZMES President, Fiona Charlton says, “What they have failed to understand previously, is that ME/CFS is truly a debilitating and disabling condition, with little recognition, and inadequate access to services.
Reclassification would help provide the support needed for people with ME/CFS to have improved quality of life and improved equity to health services.”
There are an estimated 45,000 people living with ME/CFS in New Zealand, and the potential for this to drastically increase due to many with Long COVID also fitting the diagnostic criteria for ME/CFS.
Many of these people living with this disabling condition do not fit the criteria for NASC, Care Plus, and Long Term Conditions support through government services.
Home help is a crucial service but not easily accessible currently. Reclassification would legitimise how debilitating this condition is and validate the condition as a disability, enabling access to support.
The petition has been accompanied by an evidence-based report, sent to Whaikaha (Ministry of Disabled People), Health & Disabilities Commissioner, Disability Rights Commissioner, Health Select Committee, Health Ministers, and the COVID-19 Response Minister, and ANZMES is awaiting their responses.
ANZMES is very pleased with the new appointment of CEO to Whaikaha. Paula Tesoriero understands the needs of people with ME/CFS and we not only congratulate her in her role and believe she’ll do a great job for all people living with disabilities, but we hope that in this new role she’ll be in the position to affect real positive change for people with ME/CFS.
Charlton says, “we have not given up hope.”
“After this due consideration by parliament and portfolio ministers, and the new CEO of Whaikaha, we hope that we will receive the very long overdue ‘yes’ we have all been waiting for.”
The petition closed on 29th August. Simeon Brown, National MP for Pakuranga kindly agreed to submit the petition on ANZMES behalf to be read in parliament. This will happen within the next month.
What is ME/CFS?
A chronic illness involving overwhelming ongoing fatigue, ME/CFS is often triggered by a viral illness. The condition causes a variety of symptoms that range in severity as it affects many body systems, such as the immune, neuroendocrine and autonomic nervous system.
Who are ANZMES? ANZMES has been providing information, building awareness, funding research, and advocating for people with ME/CFS for the past 42 years (since 1980). As the national advisory body for ME/CFS in New Zealand, ANZMES disseminates evidence-based information nationally, and represents the ME/CFS voice globally as a founding member of the World ME Alliance. ANZMES acts as the voice of all people living with this disabling disease through advocacy and leadership.
See www.anzmes.org.nz/petition-disability for more information.
Petition: Reclassify ME/CFS to Disability
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.”
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.
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
Severe ME Day
August 8th
August 8th marks Severe ME Day.
It is a day to remember those we’ve lost to #severeME and to be the voice for those with #ME/CFS who are too sick to speak, too sick to leave their beds, to sick to leave their homes.
25% of people with ME/CFS are housebound or bedbound. Some spend decades in darkened rooms with noise cancelling headphones, no electronics, little to no social interaction. Noise, light, chemicals, and temperature changes can all induce severe pain.
Today we act as the voice, to build awareness for this cruel, debilitating disease. We seek to educate the general public and we advocate continuously for better treatment, better diagnostic tools, and better government support and access to home help services.
Preventing Long COVID
Rosamund Vallings MB BS
We know that any viral illness will be followed by a post-viral phase. During this time the body is theoretically in “recovery mode.” Even after a simple cold, a person can be left feeling rather drained and limp for a few days but will usually slowly recover.
In those who are diagnosed with ME/CFS, the majority will have started this illness with a viral infection, from which they never seemed to recover. When you have a viral illness, your immune system goes into “disarray” and is upsetting your whole system, seemingly fighting the virus. Gradually the fight is over and successful, and you feel recovered. But those who end up with ME/CFS have an immune system which seems to persist in the fighting mode, producing a lot of extra hormones, chemicals and many other immune system abnormalities. This is exhausting and leads to many ongoing changes and symptoms. The changes may affect the body chemistry and the metabolism further, and have far-reaching effects on the brain, muscles and other body systems.
So why should the after-effects from COVID-19 be any different? There are thousands of people around the world now being diagnosed with the condition called “Long COVID,” and immunologically and chemically, it is no different from ME/CFS – a prolonged post-viral state – often very severe.
We have to ask ourselves “Can this condition be prevented?” as there is no “quick-fix.”
We do know however that pushing yourself hard during the recovery phase can lead to worsening symptoms and potentially to a final diagnosis of ME/CFS.
After COVID-19 most people yearn to get their health back and return to a full life again. There is a temptation to return to normal as soon as possible. But there is certainly good evidence now that pushing hard mentally or physically too soon, can prolong the illness, or even cause relapse.
During the recovery phase from COVID-19, it is therefore important to take supreme care of yourself in order to minimise the risks. We know that some people are probably genetically vulnerable, and we also know that those already with a diagnosis of ME/CFS almost always will risk worsening symptoms or even serious relapse if they push too hard mentally or physically. So, we need to translate these facts to those in the recovery phase from COVID-19.
While you are recovering from COVID-19 you need to acknowledge the known facts. So,
- stay home and rest while you still have symptoms (however mild)
- do not indulge in hard exercise, or long work hours
- go to bed early
- rehabilitate very slowly and cautiously.
While this approach may not prevent a prolonged illness such as ME/CFS, you are giving yourself a good chance of regaining your pre-COVID health.
COVID-19 self-management booklet created by Our Health Hawkes Bay Whakawāteatia:
What is Long COVID?
Long COVID is a condition that occurs in people with a history of probable or confirmed SARS-CoV-2 (COVID-19) infection. It usually begins 3 months from the onset of COVID-19 with symptoms that last for at least 2 months that cannot be explained by an alternative diagnosis. For some people symptoms can last months after the infection has gone. This is sometimes called post-COVID-19 syndrome or Long COVID.
Common Long COVID symptoms include:
- extreme tiredness (fatigue)
- shortness of breath
- chest pain or tightness
- problems with memory and concentration (“brain fog”)
- difficulty sleeping (insomnia)
- heart palpitations
- dizziness
- pins and needles
- joint pain
- depression and anxiety
- tinnitus, earaches
- feeling sick, diarrhoea, stomach aches, loss of appetite
- a high temperature, cough, headaches, sore throat, changes to sense of smell or taste
- rashes
How is Long COVID treated?
Treatment for Long COVID is similar to that of ME/CFS. It is about managing symptoms and pain.
The key to symptom management is pacing.
If PEM (post-exertional malaise) is experienced, you must avoid exercise and activities that cause fatigue or increased symptoms, and conserve your energy.
Dr. Charles Shepherd provides an extensive report on Long COVID and ME/CFS. Read it here:
Dr. Charles Shepherd also provides an extensive report analysing the similarities and differences between Long COVID and ME/CFS. Read it here:
Paediatric pacing guide by ME Action UK:
Paediatric pacing guide.
Adult pacing guide by Action for M.E.:
