May 12 Marks The International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day: ANZMES

May 12 marks the international Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, on Florence Nightingale’s birthday (as it is thought she developed ME/CFS after an infection contracted during the Crimean war). Each year on this day ANZMES (the Associated New Zealand ME Society) seeks to provide education and build awareness, as well as advocate for and support those with ME/CFS and their families. This year, with COVID-19 still present globally, attention must also be on those diagnosed with Long COVID. Long COVID will present new challenges. Many of those challenges have already been faced by the ME/CFS community.

Myalgic Encephalomyelitis (ME/CFS) is a serious long-term illness causing disabling symptoms exacerbated by both mental and physical exertion[1]. Despite the person often appearing ‘well’ there are debilitating symptoms that include but are not limited to: incapacitating exhaustion, post-exertional malaise, pain, sleep disturbances, cognitive and gastro-intestinal issues, and orthostatic intolerance (severe light-headedness when standing). The illness affects all genders, races and ethnicities. It affects children, those at university still studying, those just entering the workforce, mums and dads juggling home and work and people at the peak of their careers, right up to the elderly who already have other struggles. Some will recover after some months or years, but those who are still sick two years after onset are likely to suffer this illness for the rest of their lives.

In NZ there are at least 25,000 people living with ME/CFS – that’s approximately 1 in every 250 adults and 1 in every 134 youth. It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV)[2]. The COVID-19 virus has resulted in a post-viral syndrome for an estimated 25-35% of all cases[3]; a syndrome similar in symptomatology to ME/CFS. Those still unwell twelve weeks after onset[4], are classed as having Long COVID and some go on to receive an ME/CFS diagnosis too. This means the prevalence of ME/CFS in NZ and worldwide is increasing.

There is currently no cure for ME/CFS. However researchers around the world, including Cornell, Stanford and Harvard Universities in the USA, are working to understand the disease, find a diagnostic test and develop more treatments. Despite this, research is woefully underfunded. In the last year The European Union has called for more funding[7]. Researchers here in New Zealand, including a team led by the Rutherford Medal winner Emeritus Professor Warren Tate of the University of Otago, have to rely on donations from people with ME/CFS, their families and organisations such as ANZMES. One such study also funded by Brain Research NZ is to assess the pathophysiological similarities between ME/CFS and those diagnosed with Long COVID[8]. Dr. Tate states “Unlike ME/CFS patients who have had their illness from six months to over 40 years in some cases, the long COVID group with post-viral fatigue have been unwell for a relatively short time (up to a year). This is early in the course of what could be a lifelong disease like ME/CFS, so now is the best time to research therapeutic options that might alleviate – and even reverse – the disease.” [9]

The increase of people with ME/CFS and Long COVID has far-reaching repercussions. For society this means a loss of available people in the workforce and further burdens to the public health system. For the individual it means increased medical costs and a loss of salary. Between 40-81% of those with ME/CFS are unable to maintain employment due to fluctuating, disabling symptoms[10]. A decrease in social contact can result in social isolation, loneliness, and diminished quality-of-life[11]. Even those with ‘mild’ symptoms experience at least a 50% decrease in pre-illness activity[12]. Imagine being unable to meet your friend for coffee at the local café because you don’t even have the energy to shower and dress. Or consider being housebound, not just for a few weeks (like many kiwis experienced during lockdown) but for decades or a lifetime. Imagine the teenager who cannot physically attend school and has to complete coursework from bed. Or picture not being able to play with your children or grandchildren, and missing out on seeing them in school plays and sports. This is the reality for many with ME/CFS.

This year, on the International ME Awareness Day (May 12th), please think about those with ME/CFS and Long COVID, who face ongoing isolation and difficulties associated with living with a chronic illness.

Resources are available for patients, carers, teachers and health professionals through the Associated New Zealand ME Society (ANZMES) at www.anzmes.org.nz.

[1] https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

[2] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[3] Open Medicine Foundation estimates https://www.omf.ngo/covid-19-to-me-cfs-study/

[4] https://www.medicalnewstoday.com/articles/long-covid#definition

[5] For a more comprehensive list visit: https://www.massmecfs.org/cfids-me-cfs?start=1 and https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

[6] https://www.pharmaceutical-technology.com/comment/long-covid-complications/

[7] https://www.europarl.europa.eu/news/en/agenda/briefing/2020-06-17/22/myalgic-encephalomyelitis-more-funding-needed-for-research-into-complex-illness

[8] (http://www.brnz.ac.nz/news-events/brain-research-new-zealand-funds-covid-19-research-projects)

[9] https://www.sciencemediacentre.co.nz/2021/04/29/long-covid-in-new-zealand-expert-qa/

[10] Chu, et. al (2019). https://www.frontiersin.org/articles/10.3389/fped.2019.00012/full

[11] Jason, et. al, (2008) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2324078/

[12] https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

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