The ME You Don't See
International ME/CFS Awareness Day 2020
I was inspired to illustrate this during the 2020 Coronavirus pandemic when majority of the world were in lockdown as COVID-19 raged across the planet. I wrote an article on my blog Illustrator Interrupted to accompany the illustration here: ME? Lockdown was already my normal
The Horrible History of ME
The quality of life for those with ME is exactly the same as it was generations ago.
This illustration was done for part three of my story I caught a virus and never recovered posted on my blog Illustrated Interrupted. Part three investigates The Horrible History of ME, starting from medical misogyny and gender inequality, to the more malevolent motive by a faction of UK's medical establishment for falsifying the WHO's international guidelines and wrongfully reclassifying ME as "psychological fatigue", to the discredited PACE Trial and the recent hijacking attempt of millions more "long haulers" by psychiatrists. Throughout this article, I touch on how these factors will affect people with Long COVID, concluding with what we should do about it.
All Out Of Tears
"My soaring spirit trapped inside a torture chamber that is my body." ~ Amanda Francey 2020
On my seven year sickiversary in 2020, I decided to write Part One of my story, I caught a virus and never recovered. It begins the weekend prior to the 12th of August, 2013, when I was healthy, happy and loving life, to being completely debilitated overnight. This marked the beginning of a long journey filled with uncertainty and vulnerability living with Myalgic Encephalomyelitis (ME). I've been slowly writing this three part series over several years.
In the lead up to publishing Part Two of my story, I illustrated All Out Of Tears from my bed on my iPad Pro with an Apple Pencil, using my favourite mobile drawing app, Procreate 5.
I visualise my spirit, soul, psyche (whatever you wish to call that part of self that has meaning) as an eagle. When you look into my eye, you will see an eagle soaring, unable to escape the body that imprisons it. The water represents seven years worth of tears.
It has been over eight months since I published Part Two along with my illustration, All Out Of Tears, and I have yet to finish Part Three. My neurological symptoms make it very difficult. I can only spend a short time each week researching or writing. Even reading a book, writing an email, filling out a form or writing a list is a huge struggle for me, all the while rapidly depleting my energy.
I’m very close to completing Part Three of my article, which will be published for ME Awareness Week 2021. I feel Part Three is the most important chapter as it covers in detail the horrible history of ME, the inexcusable reasons why there are no biomarkers or effective treatments to improve the quality of life of those unfortunate to be afflicted with ME today. Including details of: historic medical misogyny and gender inequality; the wrongful redefining ME as Chronic Fatigue Syndrome (CFS); the hijacking of ME/CFS by a group of psychiatrists.
The factors above have been described as ‘one of greatest medical scandals of the 21st century’ by MP Carol Monaghan – thus stalling proper biomedical research into ME for decades.
Sadly, a percentage of Long COVID patients who go on to develop ME, may also suffer because of these historical mistakes and medical neglect.
We are the Millions Missing
International ME/CFS Awareness Day 2023
I created the above artwork for the Millions Missing from their lives due to ME/CFS, long COVID and associated misunderstood conditions. For decades people with ME/CFS have been missing from healthcare, medical education, disability support and research funding.
Up to 250,000 Australians living with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are being harmed by Australian medicine lagging decades behind international standards. I wrote an article on my blog Illustrator Interrupted to accompany the illustration here: Australia's Outdated Clinical Guidelines are Causing Harm
Broken Leg Syndrome
Imagine if CBT and GET were the only treatments available for a broken leg.
The hallmark feature of myalgic encephalomyelitis is post-exertional symptom exacerbation (PESE), sometimes referred to as post-exertional malaise (PEM). This is because people with ME have a dysfunctional energy metabolism and autonomic nervous system. Increasing exercise without treating the underlying cause is like forcing a person with a broken leg to increase walking without offering them treatments and appropriate management first. Fortunately people with broken legs have treatment options such as surgery, plaster, rest and crutches. People with ME don't have effective treatments because psychiatrists hijacked all the research grants for their quack cognitive behavioural and graded exercise therapies, wrongfully blocking biomedical research for decades. I've written in more detail the motivation behind this replica abstract and cartoon on my blog Illustrator Interrupted.
Loneliness with ME
"It's often when we need company the most, we're too sick to have company."
This is the case for millions worldwide who have moderate to severe myalgic encephalomyelitis (ME). For people with ME, the feeling of loneliness can be from being near people who don't understand, to being physically too sick to be near people. I've written a post on the topic of loneliness on my blog Illustrator Interrupted.
. . . .
See ME Expo | ME Advocacy Project
I recently started up a project of hosting online Art Exhibitions on my new website See ME Expo: www.seemeexpo.com.
My goal with See ME Expo is to create an engaging and entertaining way for family, friends and society to learn about myalgic encephalomyelitis (ME) and to raise much needed funding for medical research and patient support. This expo will be raising funds for a variety of ME research and charities.
Another reason I created See ME Expo was to encourage more creatives with ME to express their experiences through art, words, music and film.
. . . .
. . . .
Don't Forget ME
ME/CFS International Awareness Day 2019
The idea to illustrate this dark comic came to me after I had read about two patients who had tragically died from ME/CFS. One woman was 39 when she died of 'natural causes' and the other, a teenager – who should have had her whole life ahead of her – died when she was only 19. Both patients' symptoms were not taken seriously by the medical community. They were victims of medical negligence and abuse because the medical community simply weren't – and still aren't – educated properly about this serious, complex, neurological disease. Despite ME/CFS being classified as a neurological disease by the World Health Organisation since the 1960s, it receives far less funding in biomedical research, little to no attention in medical schools, compared with any other major disease with a similar or better quality of life. Yet, ME/CFS is far more prevalent than any other serious multi-system disease.
I wrote an article on my blog to accompany this comic. * Trigger Warning * The following content could potentially be emotionally challenging for some readers: Don't Forget ME
Elephant & ME
ME/CFS International Awareness Day 2018
This was the first illustration I created for ME advocacy during April 2018. It was when my own health deteriorated and I realised there are millions worldwide who have had their lives stolen by this disease, I couldn't remain silent anymore. While most don't die, they can't be described as living. It's like a torturous living death existence, with no effective treatments on the horizon. I've since published an updated version on my Illustrator Interrupted blog.
ME Advocacy Network Australia
Logo Design - 2019
The Forget ME Not Flower petals represent people with ME at varying spectrums of disease. As the petals fade away, the less visible the person is in life, due to the severity of their illness. Linking hands symbolises a compassionate network of people supporting each other through all shades of suffering. The sun in the flower centre illuminates energy, hope and strength that comes with being part of a positive community advocating for patients, and families of patients with ME.
ME Advocacy Network Australia - Website
ME Advocacy Network Australia - Facebook
ME Advocacy Network Australia - Twitter
. . . .
Invisible Disability Lanyards
Graphic Symbol & Card Design - 2020
I was motivated to design and share these invisible disability cards with Emerge Australia and ME Advocacy Network Australia to help our vulnerable communities become visible when out and about, whether that be standing in a queue or needing a seat on public transport. It is my hope this card will give us the visibility so we can confidently ask for assistance without the need to explain the complexities of our illness.
The story behind designing this disability card.
Many people living with ME/CFS, including myself, find leaving the house to buy essential items an immense physical challenge in itself. The post-exertion from standing in queues after trudging the aisles can put some of us in bed for days, weeks or longer with debilitating symptoms. However, the battle inside our body is invisible to others, which makes it awkward to ask for help when we appear healthy and able. This is why many of us depend on delivery services.
When my weekly grocery delivery was cancelled in early March and all online orders had been stopped completely due to the coronavirus pandemic panic buying, I knew people with ME/CFS would be at greater risk of further deterioration to their already compromised immune system and impaired energy system. Having to endure standing in long queues prior to entering the shop, navigate crowded aisles with many empty shelves, then queue up again at the checkout without all essentials, knowing you have to venture out again in the next day or two is annoying for anyone, but it is a nightmare for vulnerable people with an invisible illness.
. . . .
A collection of illustrated quotes from my blog, Illustrator Interrupted.
🔍 click on product images below to enlarge and < view gallery >