Why should you care about ME/CFS?

Journalist and political activist George Monbiot calls the treatment of people with ME/CFS “the greatest medical scandal of the 21st century” and compares it to climate denialism.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) affects more people than Parkinson’s disease, breast cancer, or multiple sclerosis combined, yet it receives only a small percentage of the funding allocated to other diseases. ME/CFS is more debilitating than many chronic conditions, including multiple sclerosis, chronic renal failure, congestive heart failure, lung cancer, stroke, and type 2 diabetes.

As someone with ME/CFS who can still communicate, it’s important for me to raise awareness about the disease on behalf of those who can no longer speak.

Why should you care?

You probably know others with ME/CFS, but they are likely housebound, so they might be missing from your social life. If you don’t know anyone with ME/CFS apart from me now, you likely will soon. There are over a quarter of a million people with ME/CFS in Australia, and the numbers are growing rapidly. ME/CFS is most commonly caused by an infection, and approximately 1 in 20 COVID-19 infections result in ME/CFS. Teachers are the profession at the highest risk of long COVID and therefore ME/CFS.

Seventy-five percent of those affected are women, and neurodivergent people and people with hypermobility issues are overrepresented. May is ME/CFS Awareness Month, making it a good time to learn about the condition.

People with ME/CFS experience a wide range of symptoms, including debilitating fatigue, sleep dysfunction, cognitive difficulties, dizziness, flu-like symptoms, gastrointestinal problems, and an inability to regulate temperature. The central feature of ME/CFS is post-exertional malaise (PEM), meaning that symptoms worsen after physical or mental activity. PEM is very disabling and leads to fluctuations in a person’s health: what they may be able to do one day, they might not be able to do the next.

In my case, I might have only a few productive hours in a day. I explain to kids that I’m like an iPhone 6 with a dodgy battery, so I need to be “plugged in” most of the time to function. “Plugged in” means lying down with as little stimulation as possible. Some days I’ll have six hours of productivity, other days four, and on some days I can barely feed myself and my cats. Currently, my level of the disease is mild to moderate. People with severe ME/CFS are bedbound, many need 24/7 care, and some are tube-fed.

To continue working as a teacher, my 86-year-old dad comes over daily to wash my dishes, and I employ a friend to change my sheets and hang out the washing. My neighbour takes out the bins. I sit on a stool to shower, another to brush my teeth, and another to cook. I’m one of the lucky ones who can shower independently, although I can’t wash my hair very often, so please overlook it if it’s greasy.

I shop exclusively online, which is frustrating. I’ve been to a store only once in the past 10 months. The only place I go to is work because I need a mobility scooter to get around, and I can’t get it out of the car by myself. Of course, I can’t risk catching COVID-19 or even a cold, so I do not socialise indoors. I caught a mild cold last winter, which caused a terrible “crash” that lasted several months and lowered my baseline from mild to moderate ME/CFS. I couldn’t defy gravity for a few months—it felt like it had been dialled up to the level of a powerful magnet, and I was so dizzy and lightheaded that I relied on walls and furniture to move around the house.

The flu vaccine I had in April has improved my baseline, allowing me to increase my productivity without getting sicker. The change has been noticeable: my Apple Watch shows I’m burning more energy and able to stand longer. I don’t know how long it will last, but it feels wondrous to have a slight reprieve from relentless fatigue. However, I can’t plan anything because I never know if I’ll be able to get out of bed or function on any given day.

There is little support available if you’re disabled and not on the NDIS (National Disability Insurance Scheme), and it’s nearly impossible to get on it if you have ME/CFS. Additionally, it’s nearly impossible to get medical assistance, as ME/CFS, despite being recognised as a disease since 1955, has been omitted from most medical training. Politically, it’s fascinating how researchers and insurers collaborated to deny the physical causes of the illness, justifying psychological treatments like cognitive behavioural therapy. When I saw a new GP in Fremantle last year and told him I have ME/CFS, he looked puzzled and asked what the ‘M’ stood for. Unfortunately, we’re left to do our own research. There’s not one specialist in ME/CFS in Western Australia.

The disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. A US analysis of funding and disease burden found that ME/CFS is the most underfunded disease relative to its burden, with ME/CFS receiving roughly 7% of the funding commensurate with its disease burden. With an estimated 35 million additional people developing ME/CFS from COVID-19, awareness and funding are beginning to increase.

If you’d like to donate, Emerge Australia is a not-for-profit organization that supports and educates people with ME/CFS, as well as practitioners and the public.

If you’d like to be an ally for people with ME/CFS, follow the hashtags #millionsmissing, #mecfs, #MEAction, #longcovid, #pwME, #MyalgicEncephalomyelitis, among others.

Quotations from experts:

– “Patients with this illness experience a level of disability that’s equivalent to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis.” – Dr. Daniel Peterson

– Scientist Alain Moreau states that “ME/CFS is probably the last medical enigma of the 21st century.”

– AIDS researcher Dr. Nancy Klimas says, “I split my clinical time between the two illnesses [AIDS and ME/CFS], and I can tell you if I had to choose between the two, I’d rather have HIV.”

– “ME/CFS patients feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” – Professor Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University.

– “ME/CFS is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterisation.” – Laura Hillenbrand, Author and person with ME/CFS.

– “If you get chronic fatigue syndrome, or ME/CFS, your life as you know it is over. That is really sad because it hits people in the prime of their life.” – Dr. Ron Davis, Director, Stanford Genome Technology Centre, Professor of Biochemistry and Genetics, Stanford University.

Thank you for reading!

x Looch