What Do You Know About ME? World ME Day Asks You To Learn More

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:
Complex Chronic Illness Support.
ME/CFS Support (Auckland).
ME/CFS Canterbury.
MEISS Otago.
ME Awareness.
Rest Assured Respite Trust.

Find out more about ME/CFS or to take action to support World ME Day by visiting: www.worldmeday.org

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