Elephant and ME

Myalgic Encephalomyelitis (ME/CFS) has impacted my life in a profound way. The last day I remember feeling 'normal' was August 11, 2013.

That was the day I manned a face painting stall and painted hundreds of little faces at my children's school fete. That day was so frantic, I didn't have time for a short lunch break, or even a toilet break.

Unbeknown to me, I was also coming down with a flu-like virus, which would leave me in bed for days with a high fever. Never in my dreams could I have imagined still being sick many years later, with currently no approved treatments to allow me to return to a somewhat normal life.

During my mission to find out why my body was broken, I had visited numerous specialists and was first diagnosed and treated for an autoimmune connective tissue disease and fibromyalgia. However, despite those treatments, my most debilitating issue remained. This turned out to be a thing called Post-Exertional Malaise (PEM), which is the hallmark feature of ME/CFS.

I'm fortunate my GP and rheumatologist had given me an early diagnosis (within six months of my symptoms starting). However, because this condition is mostly referred to as Chronic Fatigue Syndrome (CFS) – or worse, just Chronic Fatigue – by the Australian medical community, I didn't realise the seriousness of it until 2017, when my diagnoses was confirmed by a second rheumatologist.

I remember being so frustrated during my appointment, that I started sobbing at the rheumatologist – 'But fatigue is only ONE of my symptoms, it's ALL OF THESE (pointing at my long list of symptoms) that become worse after I do anything at all!' – He sympathetically assured me CFS is a real disease and that all my symptoms fit the criteria. It wasn't until I returned home and, at his recommendation, googled 'Chronic Fatigue Syndrome' and stumbled upon Emerge Australia that I realised how seriously debilitating this disease was and the relief of knowing the severity of my symptoms were finally validated by current research.

Emerge have always been more up-to-date with the science of ME/CFS and have more reliable patient and carer information than our HealthGov websites, so I'd recommend Australians who think they, or a loved one, might have ME/CFS to head there first.

To be honest, I felt a little silly, because if I had learnt more about the impacts of exertion in the beginning, (instead of referring to outdated Australian HealthGov websites), I wouldn't have kept pushing myself, driving my children everywhere, going to most of their school and sports events, power-walking everywhere, pushing through the household chores and grocery shopping all while trying to continue my career of designing and illustrating.

The medical community don't seem to understand how debilitating this condition really is and I was given the impression that CFS is no big deal and I'd feel better after a bit of rest, then a gradual increase of exercise. This made me feel like a complete failure when my health became worse instead of better after trying these recommendations. I was finding it harder and harder to keep on top of things. So I just kept on pushing until I physically and cognitively couldn't do anything at all. If I understood what this disease was from the start, I probably would have taken my health more seriously and listened to my body. Perhaps I would only have a mild form of ME, instead of being mostly housebound.

I have no doubt this continuous pushing myself (boom bust cycle) caused my health to progressively worsen and I've pretty much been in a constant state of rollover Post-Exertional Malaise (PEM) since. PEM describes a cluster of symptoms that become worse after physical or cognitive exertion. The more my illness has progressed, the more trivial my exertion can be to result in a severe episode of PEM.

For me, PEM is bone crushing exhaustion, weak and heavy limbs, swollen neck glands and sore throat, pounding headache, dizziness and my muscles burn with lactic acid (like I've just sprinted up 6 flights of stairs), but all I've done is wash my hair or walk from my bedroom to the bathroom.

ME/CFS has robbed my ability to function as a 'whole' person since August 12, 2013. And it has peeled away a little more of me every year since. At the beginning of 2018, I had to put my dream career of illustrating children's books on hold, indefinitely. Turning down multiple contracts offered by my favourite children's book publishers has been a devastating blow to my future as a children's book illustrator.

I recently made a one minute video about my experience to help spread awareness for ME/CFS. You can view this video and share from YouTube – Music in this video was produced by: A singular Perversion - Darkness by Kevin MacLeod (see full music credit on YouTube)

I'm usually a very private person and only share my artwork to the world. It's taken me some time to work up the courage to draw myself struggling along with an invisible illness and to share my personal story.

I created this illustration to give others an idea of what it feels like to me, to have ME/CFS.

On better days, I only have the wet cement to wade through, on worse days, I have that stubborn elephant to contend with. Sometimes, the elephant sits right on top of me. Fortunately, I don't have too many days in a row like that, where I'm completely bedridden.

I consider myself lucky to be in the moderate spectrum of this neurological disease (meaning, I currently function anywhere between 30% - 50% of my former-self).

Why am I lucky? During this journey, I've discovered there's a darker, more severe end of the spectrum. And to be honest, it terrifies me.

The patients in the very severe spectrum have given me the strength to speak out, because they can't. They lost that ability long ago. They've lost the ability to walk, talk, feed themselves. They've been 'fully' missing from life for years. Some, missing for decades. Hidden away, in a quiet, darkened room: no light, no conversation, no music, no books, no movies, no social media to distract themselves from their suffering. Any stimuli causes them more pain and will exacerbate all symptoms.

Life is hell for those at the severe end, and for their families. They watch on helplessly, as their loved one's life is stripped away, leaving just a shell of what was once a happy, healthy, and energetic person with a promising future.

There's currently no approved medical treatment for ME/CFS. Researches are coming close, but they need funding and they need the support from our government and our medical system.

Despite clinical studies revealing people with ME/CFS are 'measurably more disabled' than people with Multiple Sclerosis (MS), ME/CFS receives a great deal less funding and disability support from the Australian government.

Even though up to 250,000 Australians (1 in 100) are estimated to have ME/CFS compared to the 25,600 Australians with MS, ME/CFS receives far less attention in medical training.

ME/CFS has been recognised as a neurological disorder from the World Health Organisation (WHO) for over 50 years, yet has received ZERO government NHMRC dollars for 'biomedical' research funding in all these decades. Only last year, 2019, did our Government announce a 3 million research grant for ME/CFS biomedical research for 2020. This is still less than the 4.5 million MS received from the NHMRC in 2018 alone.

In previous decades, the Australian NHMRC mostly funded grants for Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) aimed towards generally fatigued patients with a variety of fatiguing conditions ranging from depression fatigue to post cancer fatigue. Only a small percentage of that funding was specifically for ME/CFS patients. But that too was mostly CBT and GET, which is not only ineffective and not evidence-based, but potentially harmful for many patients with ME/CFS.

Here are some words from a professor from the National Centre for Neuroimmunology and Emerging Diseases (NCNED)...

"The name Chronic Fatigue Syndrome was given to this condition because people didn't understand what it was," said Professor Don Staines, co-director of Griffith University's NCNED. Professor Don Staines and his team have found it's a malfunction in the body at a cellular level.

Professor Staines said, "There's a defect in the receptor meaning they no longer function the way they should. What the receptors should do is to be able to transfer calcium from outside the cell to the inside.

The discovery of abnormal calcium immune system affects people with ME/CFS in three main areas of the body where ME/CFS-related pain usually occurs – the brain and spinal cord, the pancreas and the stomach.

Calcium Ions are absolutely critical for cellular function, in every single cell and every single tissue, in the body."  ~ quoted from the Huffington Post and Today Tonight Adelaide's Story.

"Although it's known as Chronic Fatigue Syndrome," Professor Don Staines said, "fatigue is an unfortunate word because it trivialises the severity of the condition. The formal name of the illness, Myalgic Encephalomyelitis, is far more accurate because, in medical terms, it relates specifically to brain and spinal cord inflammation with associated muscle pain."

Myalgic Encephalomyelitis (or ME)

It's a tricky word to get your mouth around. It's a bit like that word, supercalifragilisticexpialidocious, which takes a little practise to say it right.

So let me break it down for you:

MYA                     muscles

ALGIC                 painful

ENCEPHALO     brain

MYEL                  nerve

ITIS                      inflammation

I have created a Pinterest Board exhibiting ART and WORDS by artists around the world, as they express the bone-crushing exhaustion, pain and hardship that is endured from existing with this disease... ME/CFS 'Through the Eyes of Artists'

This story was originally written and posted in 2018 on my art blog From The Art Room

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If you would like to know more about ME/CFS, please visit the following websites:

Watch the following FREE videos

What is ME? short overview

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: https://vimeo.com/ondemand/22513/108797012

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 NetflixVimeo On Demand and Apple iTunes.

What can you do to help?

1. Please help spread the awareness with all of your friends, family, medical community and politicians. 

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.