Join us! Be a #GlobalVoiceForME
This year, May 12, coincides with the 55th anniversary since the World Health Organisation (WHO) first classified Myalgic Encephalomyelitis as a neurological disease.
Yet there is still no cure, and no universal treatment.
Since the COVID-19 pandemic the cases of those with the post viral illness – long COVID is estimated to have reached 65 million worldwide. Half of these may develop ME.
We now have a Global Health Crisis. New Zealand is not immune.
Join us as we shed light on the #GlobalHealthCrisis
In Aotearoa/NZ we estimated ME cases at between 25,000 and 45,000. Now, with 50% of long COVID cases meeting the diagnostic criteria for ME (also known as Chronic Fatigue Syndrome) we are expecting a rise to 416,350 people in our country facing this debilitating condition.
Yet there continues to be no dedicated government funding for research, treatments, or service provision.
The ME/CFS organisations around Aotearoa are under-resourced, under-funded, and under-staffed yet are expected to support this growing prevalence of cases, and we will, because the need is there.
But action must be taken now!
We urge you to contact your local member of parliament and tell them about this dire situation and what they can do to help this growing community of unwell people. People like you and me.
You can send this template to your local MP and to Dr. Shane Reti the Minister of Health.
https://docs.google.com/document/d/1cBerzIi9mQ8l6BjXyF9r23WLQZEHG1DCcG_qOo1Var4/edit?usp=sharing
Just print it, sign, and send!
or copy, paste, and email!
Other ways you can get involved to make ME visible this World ME Day.
- Learn – learn about ME and long COVID so you can offer support to friends and family living with the condition – visit anzmes.co.nz and worldmealliance.org
- Share – be a #GlobalVoiceForME, share your ME story on social media, share your lived experience or make a poster to educate others about ME.
– Share our February and April press releases.
Use the hashtags #GlobalVoiceForME #GlobalHealthCrisis #NZCollectiveVoiceForME. - Participate – send ANZMES your photo holding a piece of paper that says how many years you’ve been unwell with ME, to be used in a video on social media.
– Send a video to ANZMES to be shared on social media, highlighting your lived experience with ME and what you would like the government to do to tackle this crisis. - Fundraise – host a ‘Blue Sunday’ Tea Party for ME to raise funds see https://the-slow-lane.com/blue-sunday/ for more information.
– Support your regional group by donating to their fundraiser and participate with friends and family/whānau
– Support ANZMES Blue Sunday fundraiser: https://givealittle.co.nz/fundraiser/blue-sunday-2024-for-anzmes - Light it up – Councils and business owners can light their place up in blue in solidarity for ME.
See all the action happening on our social media pages:
https://www.facebook.com/CfsAnzmesOfficial
https://www.linkedin.com/company/anzmes
Mother’s Day
This year in Aotearoa/NZ, World ME Day falls on Mothering Sunday / Mother’s Day, May 12.
We’d like you to think about how ME/CFS affects families. When there is a sick person it shapes how the children are raised, how the household is run, the income generated, and activities carried out by the family.
This Mother’s Day remember the mothers with ME/CFS who are confined to their beds with debilitating pain and exhaustion. They do not want to be ill. There is no cure.
Mothers worldwide are isolated from their families, unable to participate in normal family activities. Spouses take on additional duties to maintain the house, pay the bills, take care of their ill loved one, and raise the children. This can lead to burn out. With over 100 million people living with ME/CFS or long COVID. This is a global health crisis.
“This illness is relentless and all encompassing. Motherhood itself is like a juggling act, only ME/CFS gives you a hundred more balls, made of lead.
This illness has forced me to push back against my instincts and prioritise my own needs before those of my children’s. There are days where the guilt is crushing and I can’t give them what they want – my undivided attention or simply to push them on swings. But what I can do is give them what they need, a safe and loving home.”
Helen, ME/CFS Community Member
Join us today! Be a #GlobalVoiceForME
Join ANZMES as we support global events happening to raise awareness for ME/CFS. Find out how you can participate in World ME Alliance events for World ME Day here:
