Post-infectious diseases like Myalgic Encephalomyelitis (ME) and Long COVID are more common and much more serious than
most people realise. These illnesses can devastate the lives of those affected and their whānau, and there is no
effective treatment or cure.
The inaugural World ME Day on 12 May 2022 aims to close this knowledge gap. Initiated by the World ME Alliance, the day is an urgent call for better recognition of ME/CFS, Myalgic Encephalomyelitis /Chronic Fatigue Syndrome, for
better training of health professionals and for more research funding.
This year's theme of World ME Day is #LearnFromME and in New Zealand the day will be marked by an online Learn From ME video event hosted by the Associated New Zealand ME Society (ANZMES). The event features presentations from New Zealand experts in
biochemistry, immunology, and general medical practice. It also includes interviews with people living with ME/CFS and
Long COVID. The video presentations will remain available for viewing after 12 May.
The presentations will show that despite persisting knowledge gaps, people with ME/CFS and ME/CFS experts have
accumulated a wealth of knowledge that could help improve the quality of life for those affected by ME/CFS and similar
diseases like Long COVID - but only if we #LearnFromME.World ME Day: a call for better recognition of ME
ME/CFS is as common as it is disabling. It is estimated to affect 17 to 30 million people across the world with 20,000
to 45,000 in New Zealand. The majority are unable to work or study and a quarter are so seriously ill they are
housebound or bedbound, a heavy personal and economic burden. Yet ME/CFS remains under-researched and poorly understood,
allowing misinformation to flourish. This has resulted in ME/CFS patients being either dismissed and ignored or
prescribed treatments that are unhelpful at best and harmful at worst.
A particularly little-known phenomenon is post-exertional malaise (PEM) which refers to an unusual and disproportionate
increase in symptoms after minor activity. PEM is not known to occur in other illnesses but it is the cardinal feature
of ME/CFS - without PEM an ME/CFS diagnosis cannot be made - and PEM is also experienced by many people with Long COVID.
PEM is best managed by creating an individualised routine of rest and carefully paced activities. People with ME/CFS
have a wealth of practical PEM management experience to share with those wanting to #LearnFromME.
Kate was diagnosed with ME 4 years ago after 20 plus years of health challenges triggered from a viral illness. Before
this she was hardly ever sick, a school prefect and played high level sport representing New Zealand for Water Polo. In
2018 her system crashed after pushing through symptoms for too long when numerous doctors weren’t able to help. She
suffered with crushing fatigue that did not improve after a full night's sleep and had to give up work, sports and her
social life. She was mostly confined to her home, except for dropping off and picking up her boy from daycare/school and
other activities. She also experienced constant body pain, fluctuating headaches, neurological problems resulting in
impaired memory and an inability to concentrate and Postural Orthostatic Tachycardia Syndrome (POTS), a dysfunction in
the autonomic nervous system. Any physical, mental, or emotional effort would cause worsening of her symptoms and she
had to learn to work within a very small energy envelope. Four years on, Kate has made what is known as significant
progress in the ME community, with a reduction in symptoms enough that she can work a small number of hours each week.
She can attend more activities with her son, however her dreams of dancing and playing masters level competitive sports
are not fulfilled and she is accepting that she may never reach these and other dreams she has.World ME Day: a call for better training of health professionals
The key roles of PEM and pacing are reflected in recent updates to clinical guidance around the world. On World ME Day
healthcare professionals are encouraged to familiarise themselves with one of these. In New Zealand the regional DHB
HealthPathways websites provide up to date clinical advice. Internationally the National Institute for Health and Care Excellence (NICE) in the UK, and the CDC (Centers for Disease Control and Prevention) and Mayo Clinic Proceedings in the US, are excellent resources. Continuing medical education credits are available for New Zealand health professionals who want to #LearnFromME.
GP Cathy Stephenson states “ME affects 10s of 1000s of kiwis and their families every day, yet evidence-based management
and support is almost impossible to access. As a health sector, we need to upskill rapidly - Long COVID appears to be
remarkably similar to ME, and when the predicted tsunami of it reaches our shores, we will struggle to cope unless we
act now.”
“In the future it would be wonderful to have specialist centres set up to provide the very best care to patients with ME
and Long COVID, but for now my hope is that every health provider in primary care is able to offer a safe, affirming,
evidence based approach to managing this debilitating condition.”
“If there’s one thing to impress upon health providers when it comes to the management of ME/CFS, its Pacing. Above all
else. Pacing.”World ME Day: a call for more research funding into ME and other post-infectious diseases
The coronavirus pandemic has impacted the ME/CFS community in two ways. More people with ME/CFS are more seriously ill
after their already poor health and quality of life deteriorated further following a COVID-19 infection. And more people
are being diagnosed with ME/CFS as increasing numbers of Long COVID patients meet diagnostic criteria for ME/CFS.
It remains unclear if post-viral ME/CFS and post-viral Long COVID are one and the same disease or two very similar ones.
What is clear is that both groups desperately need effective treatments and ultimately a cure. Much more funding is
needed for rigorous biomedical research to build on what we can already #LearnFromME.
Emeritus Professor Warren Tate and his research team at Otago University have contributed substantially to our improved
understanding of post-viral illness.
Tate says “It was exciting to find molecular signatures in the immune cells of ME/CFS patients associated with
dysfunctional energy production and showing instability in the epigenetic code that controls precise production of all
our proteins, giving a clear indication of the biological basis for the illness.”
“Long COVID and ME/CFS have very similar molecular signatures for proteins connected to immune dysregulation,
inflammation and energy production.“
“The fact that ME/CFS is so functionally debilitating, and is life-long in most cases, puts huge social and financial
burdens on those affected, their families and their communities, and blunts the potential of highly productive people to
contribute value to our society.”
World leading researchers for ME/CFS and Long COVID here in New Zealand are hampered by inadequate funding. With
funding, these researchers can contribute to improving the quality of life for people with ME/CFS: Emeritus Professor
Warren Tate, Biochemist, University of Otago; Dr Lynette Hodges, Exercise Physiologist, Massey University; Dr Anna
Brooks, Immunologist, University of Auckland.World ME Day: LearnFromME
Watch the World ME Day events hosted by ANZMES on May 12th on http://anzmes.org.nz/learnfrommenz/
Visit the Learn From ME page on Facebook to read real-world lived experience of New Zealanders with ME/CFS, and for evidence-based information.
This page is a collaborative initiative between the regional and national ME/CFS organisations:
Find out more about ME/CFS or to take action to support World ME Day by visiting: www.worldmeday.org