ME? Lockdown was already my normal

The ME You Don't See

Illustrating this artwork for ME/CFS advocacy was a struggle for me this year. Partly due to my physical and cognitive limitations of not being able to sit upright (even in bed) and concentrate for long. The other barrier was emotional. It has taken me many weeks to illustrate, then articulate words to accompany this image, all while my inner monologue argued why I should or shouldn't share something so raw at this time.

We’re in unusual times where we need happy distractions, not dark, depressing images. Surely this would be too negative a topic to illustrate or write about? – my inner monologue began. Perhaps it wouldn’t be good for my mental health. Or anyone’s mental health. Maybe I should just skip advocating for May 12 International Awareness Day for ME/CFS and Fibromyalgia this year.

Everyone’s in lockdown, in social isolation and are suffering from the anxiety of the unknown. The whole world has practically stopped! Some of you are worried about finding another job, others are worried about vulnerable loved ones catching COVID-19, or your school-aged children falling behind in their studies, or you might feel sadness for missing out on that planned family trip or your close friend’s wedding.

Surely I can’t add another burden on people during this time? But what about all the others out there who are worse off than us? – the battle of my inner monologue continued – What about those who have been isolating in their homes for years, while life continued as normal outside their windows?

What about the young and talented photographer Whitney Dafoe? Will he finally unpack his camera and enjoy capturing the natural outdoors again? Or even walk, eat or speak again?

It was only a few days ago Whitney found out there's a serious global pandemic happening outside his darkened room. That's how isolated he is from the world.

There are #MillionsMissing out on life due to this devastating disease.

Imagine if you were the only person you knew in lockdown while the whole world remained open and life continued on without you. You’re excluded from your family and friends on a daily basis. Now imagine on top of this, you are feeling incredibly ill, so ill, you can’t bear noise, light, touch or stimulation of any kind. You would love to pass your time with exercise, baking, reading books, favourite hobbies, chatting with friends and family on the phone or video-link, but all are intolerable to you. Imagine not only being trapped inside your home, but inside your broken body, year after year, watching your life pass by, knowing restrictions aren’t going to be lifted in the foreseeable future as there’s no glimpse of a cure or effective treatment on the horizon.

It wasn’t until I had completed this artwork that I realised the real reason why it was so hard for me to illustrate.

I didn’t want to make others feel uncomfortable by sharing my reality.

This illustration is so raw, it even makes me feel uncomfortable. Probably because it’s a more realistic representation of how I feel most mornings during the first few hours – or during the day, after I've unloaded the dishwasher and chopped a plate of fruit – or in the evenings, after I've washed my thin shoulder-length hair (using a shower stool).

The ME You Don't See

I’ve been effectively in quarantine for two years since my illness went from five years of mild-moderate symptoms to moderate with severe patches from April 2018. Buried under the weight of concrete, lactic acid burning throughout my body and an inferno swelling within my brain and upper spinal cord. Some mornings, I feel like my skull will shatter from the internal pressure. I usually improve little by little as the day goes on – so long as I carefully pace my minor daily activities with intense resting in between – but the hell starts all over again the next morning, no matter what I do.

Why is it we don’t want to share this uncomfortable truth and don’t want to burden others with stories of our suffering?

Is it because we’re so use to reading motivational stories from those who have overcome their disability or serious illness or injury, that we're afraid of sounding negative or not trying hard enough? I mean, who doesn't love ‘inspiration porn’? It gives us hope. I want to believe I’m going to wake up next week, next month or next year and be better, even though this would be 95% improbable.

ME patients (who meet the ICC or CCC diagnostic criteria) have a rather poor prognosis especially once they've reached the 5 year mark, with only a 5% chance of full remission. Severe ME patients can’t be compared with ‘healthier’ disabled groups or even those with milder forms of Chronic Fatigue Syndrome (diagnosed using broader criteria). Severe ME patients are disabled, because they’re sick, really sick. The quality of life for people with Severe ME is comparable to the final days/weeks of end stage Cancer or AIDS. While ME can be terminal, it's more likely patients with severe ME will endure balancing on the edge of death, day after day, year – after – year.

There is no happy ‘inspiration porn’ article at the end of this ‘living death’ state of existence. There. Is. No. End.

Quantity of life isn't the only thing that matters. Quality of life is important too.

ME is the most common of all major diseases with 20-30 million worldwide and up to 250,000 Australians, yet is the most underfunded and understudied. There are currently no effective treatments to even give some quality of life for ME patients.

Click the image above to travel to Dr Guthridge's tweet.

I think part of the reason for this lack of interest and funding is due to ME/CFS being misunderstood for its invisibility and the unfortunate wording 'chronic fatigue'.

We don’t appear sick when we’re able to leave the house. If we do manage to visit the doctor or go for a short outing, it’s because we’re having a good day and of course we look well. And being commonly known as 'Chronic Fatigue Syndrome' even medical professionals have the misconception that we're just a bit tired or burnt out. However, the exertion from leaving the house – just for an hour or two – is enough to put us back in bed for days, weeks or even months! This hallmark phenomenon called Post-Exertional Malaise (PEM) is a combination of symptoms worsened by the dysfunction of multiple body systems after even minor physical or cognitive effort. This is the most debilitating part of this illness and the doctors and the community never see it.

I had to illustrate what people don’t see. The truth. The reality of this disease.

ME doesn’t discriminate – it can happen to anyone, young or old. It usually starts after contracting a common virus.

I’ll say that again... 

It can happen to ANYONE, YOUNG or OLD – and it usually starts after contracting a common virus.

If knowing this – while there’s a viral pandemic on the loose (a novel coronavirus that scientists are yet to fully understand) doesn’t make you feel uncomfortable – it should!

Scientists have discovered COVID-19 can enter the central nervous system and may cause long-term or permanent damage to various other body systems. Infectious disease and ME/CFS experts are bracing for a new wave of ME and other Post-Viral related illnesses from 2020.

For this reason, advocating for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is even more important this year than ever.

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What can you do to help?

1. Please learn about this illness and help spread the awareness with all of your friends, family, medical community and politicians if you can. I've included some short videos below as a quick and easy way to learn about ME/CFS.

2. Please let your GP know about the new ThinkGP education module and email them the link below:
Busting the myths and redefining Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
This education is accredited: RACGP 2 CPD, ACRRM 1 CME PD. The current Australian GP ME/CFS guidelines are long overdue to be renewed and include outdated therapies that have been proven to be harmful for patients.

3. If you can afford it, please donate to one of the following organisations:

Emerge Australia Inc - Supporting and advocating for ME/CFS patients and partners with Mason Foundation ME/CFS biobank.

Griffith University's NCNED - Australian biomedical research for ME/CFS. Please make sure you select National Centre of Neuroimmunology & Emerging Diseases (AHMF donors) in the 'Please use my gift to support' dropdown menu. It's important you include the option with (AHMF donors) as that goes directly to ME/CFS biomedical research.

Open Medicine Foundation - International biomedical research for ME/CFS. OMF had a pilot study published recently with the PNAS (Proceedings of the National Academy of Sciences) of the United States, a renowned scientific journal. A nanoelectronics-blood-based diagnostic biomarker for ME/CFS. They need to do a larger study to implement this testing worldwide and to provide treatments. They desperately need more funding for stage two. OMF are very close to solving ME/CFS and collaborate with world researchers, including Australia.

Watch the following FREE videos

What is ME? short overview

ME and PEM a short video explains what people don't see

After Unrest an Australian documentary.

A short story of Dr Ron Davis' race to save his son Whitney from dying from this disease.

Voices from the Shadows a 30 minute trailer

The full documentary Voices from the Shadows is available for free. First, click URL below, join up with Vimeo if you haven’t already (it’s free) - then select ‘rent’ and enter promo code VOICES to watch full documentary for free:

Watch Unrest, an Award Winning Documentary

Jennifer Brea is about to marry the love of her life when she's struck down by a fever that leaves her bedridden. When doctors tell her "it's all in her head," she turns the camera on herself and her community as she looks for answers and fights for a cure.

Unrest is now streaming in Australia on Netflix, Vimeo On Demand and Apple iTunes.

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Also published on Medium

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Amanda Francey
Writer and Illustrator

Amanda's children's book illustration career was rudely interrupted by Myalgic Encephalomyelitis and the usual co-morbid suspects.