Australia’s Outdated Clinical Guidelines are Causing Harm

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.

We are the Millions Missing

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.

My health was pretty good up until I was 39. I felt 100% healthy and full of life. But then I caught a virus in August 2013 and my life was never the same.

Since that day, each time I walk up a small hill or a few stairs, I feel the burn of lactic acid, a heavy weakness in my legs, my breathing becomes laboured and my head spins. There’s no word that really comes close to describing this phenomenon. It’s like living in an alternate reality to everyone else, where the force of gravity is too strong for a human to function. It’s a cruel thing to appear normal on the outside, but to feel so utterly poorly on the inside.

When I first told my doctor, I reluctantly called this unnameable monster ‘fatigue’.

In the beginning, when my level of illness was considered ‘mild’, it slowed down every aspect of my life. It was extremely hard at times, but I still had some quality of life. I could manage some light exercise, socialise a bit with friends and family, work part time as an illustrator and run after my three children by the skin of my teeth.

However, after a family trip overseas mid 2017 my health started to deteriorate. One day I found myself paralysed in bed. I felt a tear run down my face and I tried to brush it off only to find I couldn’t lift up my arm no matter how hard I willed it to move.

It was then I realised my baseline was slipping from mild to moderate, so I made the difficult decision to stop taking on new children’s book illustration contracts for the next 12 months to focus on recovering. It never occurred to me that after 12 months I wouldn’t be back to doing what I loved and had dreamed of doing since I was a kid.

In April 2018 we went for a family holiday in Tasmania and I walked a little too much with my excitement of needing to see as much as I could. Pushing through my post-exertional symptoms had devastating consequences. I went from moderate to severe and become mostly housebound and glued to my bed.

For the next 5 years I wasn’t even able to go for short gentle walks. I spent 20+ hours per day in bed resting so that I could function for a couple of hours a day. I could only shower once or twice a week. At my worst, I would spend hours each day in a dark room with noise cancelling headphones and a block-out eye mask. I was unable to tolerate reading, listening to anything. Even someone talking to me or walking into my room made me feel ill. My energy was so low, being exposed to minor stimuli would cause unbearable body-wide pain. All I could do was meditate, and when that was too much, breathing was all I could bear.

The ME You Don't See

And I’m one of the lucky ones.

I was so fortunate to have a doctor who pretty much knew what I had straight away. She never once attributed my symptoms as being a figment of my imagination, or due to stress, and she assured me she’d do everything possible to get to the bottom of it.

After 8 months of being tossed from specialist to specialist like a hot potato, with test after test to rule out a number of scary diseases, I was given a diagnosis with a benign name, chronic fatigue syndrome (CFS). But I didn’t know that at the time as all of the specialists I saw referred to it as ‘chronic fatigue’, which was only one of my symptoms. It wasn’t until the end of 2017 a compassionate rheumatologist said it’s more than a symptom or a syndrome, it’s a debilitating systemic disease.

He told me to google ‘chronic fatigue syndrome’. That’s when I discovered the dark history of this disease. At first I thought it was all conspiracies. Surely millions of people around the world wouldn’t be left to rot in their beds with no appropriate treatments. But then I realised I’d been suffering in silence for years, thinking it was just me and a few other unfortunate people slipping through the cracks of medicine.

The original and correct name for this condition is myalgic encephalomyelitis (ME), classified as a neurological disorder by the World Health Organisation (WHO) since 1969 (ICD 10 G93.3). It is in the same category as Parkinson’s disease and multiple sclerosis.

In 1988, the US Centers of Disease Control (CDC) decided to focus on one symptom, fatigue, which is also a symptom of many other conditions. They soon buried ME with a new name ‘chronic fatigue syndrome’ and gave it a broader diagnostic criteria which captured all sorts of fatiguing conditions in the same net. Only a handful of patients participating in studies had ME/CFS, the rest had fatigue from depression or other undiagnosed fatiguing conditions. This made any results from research inconclusive or unreliable.

A faction of the psychiatry establishment in the UK took the opportunity to hijack this neurological disease when they knowingly falsified a section of the WHO guide. They compiled a complete misrepresentation of ME by omitting numerous biological abnormalities and placing undue emphasis on lifestyle factors. They effectively changed the WHO’s classification of a physical neurological disorder to a mental health illness.

There was also the controversial PACE Trial, which was partly funded by the UK’s Department of Work and Pensions (DWP). Not only was this seen as a conflict of interest, some of the PACE Trial authors had undeclared vested interests with insurance companies. These insurers used the same group of psychiatrists to inter-refer claimants with ME/CFS.

An extensive investigation by the UK National Institute of Health and Care Excellence (NICE) revealed the PACE Trial studies on graded exercise therapy (GET) and cognitive behavioural therapy (CBT) to be poor and very poor quality and potentially harmful.

The US CDC and the UK NICE have since removed these recommendations from their ME/CFS medical guidelines. However, Australia is decades behind international standards and continue to prescribe potentially harmful treatments from over 20 year old guidelines.

Furthermore, ME/CFS research funding is considerably lower than all major diseases of a similar disease burden. The US National Institute of Health (NIH) gave more funding to male patterned baldness than to ME/CFS.

 The Horrible History of ME 

How medical misogyny & decades of medical malfeasance by a faction of psychiatry led to no treatments for ME/CFS and long COVID.

 

Today, this faction of psychiatrists and physicians who share an insular point of view that’s not supported by current scientific consensus still hold extensive power over post-viral illnesses. And they have clawed their way onto advisory boards for long COVID.

A study found 57% of people with long COVID now meet the diagnostic criteria for ME/CFS, so potentially millions more may be harmed by controversial treatments.

I was fortunate I wasn’t forced to do harmful therapies, but I was harmed by receiving no medical advice. If I’d known about resting, pacing and the dangers of pushing through from the start, I may not have lost the last 5 years of my life.

Thanks to finding helpful resources from Emerge Australia, ME Action, Open Medicine Foundation and being referred to a doctor with a special interest in ME/CFS and long COVID, I’ve had some recent improvements.

Doing a bit less than I think I’m capable of has stopped my deterioration and expanded my energy envelope. I’m still mostly housebound and spend hours in bed each day, but I’m not crashing after leaving the house as much as I used to. The term crashing is used by many people with ME/CFS to describe enduring days, weeks or months of crushing post-exertiona malaise (PEM), also known as post-exertional symptom exacerbation (PESE). Some of these crashes lead to longterm deterioration which can have devastating consequences to a patient’s quality of life for years or even decades. 

When doctors are ignorant of PEM, they will try to get their patients with ME/CFS or long COVID to move and do more, which is opposite to the advice they should be giving. The main thing that has helped me is to learn to do less. Stay well within my capacity. Over time my capacity has expanded and I’ve been able to make a little life for myself. Without having disease modifying drugs to aid my recovery, it has taken 5 years of having no life at all to gradually return to moderate, which is still only 25% function.

Talking & Walking Therapy for Broken Leg Syndrome 

To be given graded exercise therapy for a broken energy system is as barbaric as forcing a person to increase their walking on a broken leg without rest, cast or crutch.

 

One of the major issues with our current long COVID clinics, which include exercise therapies, is the majority of the clinicians are not aware to look out for PEM, the hallmark symptom of ME/CFS. With nearly 60% of long COVID patients also experiencing PEM, millions more patients will be harmed, delaying recovery and causing disability on a mass scale.

Dr Tredos, Director-General of the World Health Organisation recently stated:

"An estimated 1 in 10 infections results in post COVID condition, suggesting that hundreds of millions of people will need longer-term care.”

There’s currently no system to provide such care, as millions of people with long COVID and ME/CFS already know. Policymakers are moving like snails, kicking the can down the road as they did with ME/CFS for decades. While they procrastinate over funding proper biomedical research, they’re being seduced by this faction of physicians promising cheap snake oil therapies to ‘fix’ long COVID.

Their ‘therapies’ stalled proper biomedical research from progressing while disabling patients further, increasing burden on the economy and the healthcare system for the last 3 decades. This is why people with ME/CFS currently have no effective treatments, a doctor specialty or appropriate research funding.

Please help us spread awareness of this injustice, encourage policymakers to update medical guidelines, to include ME/CFS and long COVID in medical education and disability support and to increase research funding to be in line with diseases of a similar severity and disease burden.

We’re running out of time, each day we wait is another day of our life not lived.

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What can you do to help?

1. Sign the petition for Australia to update their guidelines.

https://chng.it/tYTq8HWHRv

2. 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.

3. 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.

https://www.thinkgp.com.au//education/mecfs

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.

4. 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: 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 available on Apple iTunes.

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Also published on Medium

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