Will You #LearnFromME This May 12?

May 12 is World ME Day. This year, the Learn From ME global campaign acknowledges that people with ME/CFS are experts of their own illness experience. They have a lot to offer those experiencing Long COVID through insights, treatment plans that work and understanding of what it is like to live with a chronic illness.

What can the Long COVID community learn from ME/CFS?

• That post-viral syndromes are real. Some people recover, others don’t and this is determined by the unique physiological makeup of each individual. They can learn to pace themselves, to not give up, and to have hope with new research being released. They can learn to advocate for themselves and they will learn and know that the ME/CFS community supports them.
• Resting is key to being able to achieve activities. Pacing is vital for sustaining periods of activity. Pacing is a common management tool for people with ME/CFS. When you apply pacing to your life, you are taking control of how you spend your time - finely balancing activity with rest to prevent overexertion. For people with ME/CFS overexertion can result in what is known as post-exertional malaise (PEM) - whereby a relapse of symptoms can cause the person to be bed bound for days unable to care for themselves, or they experience an exacerbation of core symptoms for several weeks. This can happen to people with ME/CFS not only with physical activity but mental/cognitive activity too.

“I learned how to pace the hard way.” Says Jane, a person with ME/CFS. “After repeatedly over-doing it by trying to get things done on one of my good days and then crashing and being bed bound for days after, I slowly learned how to pace my activities. Now I will put a load of washing on and then rest. I’ll peg the washing out and then rest. I can then start on the vacuuming. The key is to learn that I can vacuum one room one day and another room another day. I don’t have to get it all done at once. Balancing between activity and rest means I can sustain activity for longer without causing a relapse of my symptoms.”

Such post-exertional malaise and inability to maintain activity is said to be as a result of malfunctions in the energy production system. Research by Dr. Lynette Hodges from Massey University who has studied PEM extensively shows significant differences in exertion capabilities of people with ME/CFS when compared to healthy controls.[1]

Kathy says “I learned that what I can achieve on one day, I may not be able to achieve on another day. I usually have to spread activity out across the week, it means having an appointment on a Monday and resting on a Tuesday. I have to recover from the exertion of getting showered, dressed, fed, before driving to my appointment, and then the cognitive exertion required to function at that appointment, before getting myself back home. I used to go to the gym 7 days a week, sometimes twice a day, and work full-time, travel, and play sports on the weekend. I lived a full life, now I’m lucky if I can manage to do one thing in a week!”

Recently someone experiencing a COVID-19 infection, talked to her ME/CFS friend “I had to rest for an hour after pegging the washing out. It made me think of you, I don’t know how you deal with this every day, year in year out.”

Edith says: “I’ve learned to not give up. I have hope that with new research being released we will no longer face stigma, that everyone will know this disease is real, and the research proves this.”

By sharing their experiences, it is hoped that the general public, friends, family/whānau, and medical professionals and institutions gain valuable insights about this often maligned condition. For decades there have been misconceptions about this disease. Despite the World Health Organisation classifying it as a neurological disorder in 1969, and adding it as a “post-viral syndrome” in 2019, many health professionals still follow the misguided and unfounded school of thought that it is psychological or psychiatric in nature.

The growing body of biomedical research from around the world and here in New Zealand demonstrates otherwise. Emeritus Professor Warren Tate has identified a biological basis for ME/CFS symptoms. He has shown a dysfunction in the mitochondria (energy-making function of the cell) in people with ME/CFS and disturbed widespread physiology, highlighting the complex chronic nature of this illness. He has also recently submitted a paper regarding the biological processes that facilitate relapse and sustain ME/CFS. 

The ME/CFS community has had to be vocal, has had to stand up to misinformation, has had to demand funding for research, and has had to beg for ministry support. 

Recently retired, general practitioner, and long-time advocate for people with ME/CFS, Dr. Ros Vallings says “It is so important to get a correct diagnosis according to specific recognised criteria. That way a treatment plan can be established which is most likely to help manage symptoms.” ME/CFS is an umbrella term for a cluster of debilitating symptoms that result from malfunctions in multiple bodily systems. Despite the person often appearing ‘well’ these debilitating symptoms 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).[1]

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.[2] It commonly has acute onset (occurs suddenly) after a viral illness (e.g. Epstein Barr/Mononucleosis and SARS-CoV)[3]. 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. Dr Sarah Dalziel ANZMES medical advisor says “There are around 3,000 young people in New Zealand with ME/CFS and life can change dramatically for them when they get this illness. "Adolescents with ME/CFS identify that remaining engaged in education and therefore the ability to pursue future aspirations is crucially important. This requires a lot of support and education for teachers and parents to help children design an achievable plan for schooling." 

With omicron rife in New Zealand, yet another post-viral syndrome is looming. Of all COVID-19 cases, an estimated 10-30% may develop what is commonly referred to as Long COVID.[5] Many of these will go on to receive an ME/CFS diagnosis too. With over 1 million COVID-19 cases in NZ, that means roughly 100,000-300,000 people could become so ill that they can no longer work, attend school, and for some it will mean a lifetime being bedbound unable to care for themselves, or housebound, unable to maintain consistent activity. This will have huge economic, political, and psychosocial impacts. The government has largely ignored the high percentage of people with ME/CFS in New Zealand who are unable to work or finish school because of their illness. They will not be able to ignore the tide of illness that is threatening to reach our shores very soon. Post-viral syndromes are catastrophic not only in the personal lives of those who are ill, but to their families, community, and have far-reaching economic impacts, it will over-burden our healthcare systems, and may result in more people having to rely on government benefits to survive. It is time to wake up. It is time to invest money in research. It is time to #LearnFromME.

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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, the theme for World ME Day is Learn from ME. In conjunction with the World ME Alliance, ANZMES seeks to demonstrate the volume of knowledge that the ME/CFS community can provide. 

The Learn From ME Event on May 12, hosted on the ANZMES website provides presentations from Professor Warren Tate, Dr. Anna Brooks, Dr. Rosamund Vallings, and includes two interviews of the lived experience.

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

[1] Hodges, et. al, (2020). The physiological timeline of post-exertional malaise in ME/CFS. DOI: 10.1002/tsm2.133 

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

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

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

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

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