May 12, 2023
World ME Day – international Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) awareness day.
Join the global community in raising awareness of this debilitating illness.
This year the focus is on Post Exertional Malaise (PEM)
– the defining primary symptom of ME.
People with long COVID (LC) are also experiencing PEM, therefore the ME/CFS community offers its wealth of knowledge, expertise, and lived experience so that the LC community, health professionals, patient advocates, and the general community can #LearnFromME.
What is Post Exertional Malaise (PEM)?
PEM is an exacerbation or worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness.
For some people, sensory overload (light and sound) can induce PEM.
Symptoms include: “brain fog” (difficulty thinking, processing information), problems sleeping, sore throat, headaches, feeling dizzy, or extreme fatigue.
Any one of the many symptoms of ME/CFS and LC
can be exacerbated or worsened during PEM.
PEM can occur immediately, but typically 12-48 hours after the activity.
These episodes are sometimes referred to as “crashes” or “relapses”
and may last days, weeks, or permanently.
Patients may be house-bound or even completely bed-bound during PEM crashes.
What is the key global message for World ME Day 2023?
For World ME Day this year, we aim to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about ME or long COVID.
ME: the disease where pushing harder can make you sicker.
World ME Alliance co-chair and Solve M.E. CEO Oved Amitay notes:
“It is vital for health care professionals to identify PEM, as its presence changes the management advice a patient should be given and indicates that a diagnosis of ME should be considered. To avoid prolonging and intensifying the suffering of millions, providers must listen to and believe those who experience PEM.”
Here in Aotearoa we still have the “soldier on” or “harden up” attitude where we’re meant to tough it out, push on, push through. We also believe that exercise is the key to health and wellness. However for those experiencing dysfunction (of bodily systems) pushing through causes harm.
Kiwi amateur athlete, Aimee, recently diagnosed with ME/CFS, says:
“I used to run competitively, now simple activities like taking the rubbish out make me feel like I’ve done a marathon. It’s hard for people to understand because I can feel okay and look okay but if I push myself today I can end up in bed for weeks.”
We challenge kiwis to
“Pace yourself today
for a better tomorrow”
Support your whānau, colleagues, and friends experiencing PEM, let them know:
“It is OK to rest!”
The key tip to avoid PEM is PACING.
You will find out more about pacing on May 12 at our Special Event.
Can’t wait? Download these Resources:
For more information click here:
What is happening on World ME Day?
Throughout the day (May 12) we showcase interviews with
Dr. Lynette Hodges, Dr. Olivier Caunes, Dr. Cathy Stephenson,
and members of the ME/CFS and long COVID community.
We provide a new video resource on PEM with useful tips for symptom management.
We share stories of the lived experience and invite our community to participate.
See these stories on our Voice of ME page.
We speak with media to generate awareness about the importance of World ME Day.
It is important that our members of parliament and government agencies understand the needs of people with ME/CFS and long COVID.
We have written to key people, and we invite you to send this letter to your local MP.
Is there anything else I can do to help
people with ME and LC?
Absolutely. Yes! And it’s easy.
Visit and Like the Facebook page Learn From ME
and share the content with your community and networks,
so that everyone can #LearnFromME.
Create your own PEM poster
and share your experience and story on social media
Tell someone about what you’ve learned from ME/CFS and about PEM – talk with family/whānau, carers, friends, colleagues, peers, politicians, government, general public, and medical and allied health professionals.
Share our media press releases with your network
Share your story with local media. Guide on how to do that here
Be a champion for people with ME/CFS, many are too ill to advocate for themselves. Ensure their needs are heard and insist they are met. Share information with people facing long COVID or similar chronic illness so they too can #LearnFromME.
Send the letter above to your local MP.
Share this page with your contacts!
Share our Voices of ME page with your network!
Join us for our special Event on May 12
Donate to our May 12 Fundraiser
Proceeds will be divided equally amongst the participating Aotearoa ME support organisations.
I’m in! Where can I get more information?
The Learn From ME page on Facebook provides evidence-based content so that medical and healthcare professionals, the ME/CFS community, and the general public can access accurate, reliable, expert information to learn from ME/CFS. It also provides real-world lived experience of what it is like to live with this chronic illness, and offers support to those going through long COVID and similar conditions.
Who is behind World ME Day?
The World ME Alliance (previously IAFME).
The national organisation for New Zealand – ANZMES is a Founding Member
and the international World ME Alliance partners are listed here.
Supporting Aotearoa/NZ ME/CFS organisations are:
Learn From ME is a collaborative initiative created and run by ME/CFS non-profit organisations and regional groups throughout Aotearoa/New Zealand to raise awareness of Myalgic Encephalomyelitis and associated conditions including long COVID.
Visit these pages and share content: