Chronic Frustration

31 March 2015

I’m tired.  Tired of explaining to friends that their desire to take a nap is not equivalent to debilitating fatigue.  Tired of endless blood tests and waiting lists.  Tired of jaded university doctors dismissing multiple referrals. Tired of being told that my symptoms are all in my head.  Exhausted.  Shattered.  Spent.

Yet, the most frustrating part is – I am not alone.

According to Andrew Garner, Director-General of Queensland’s Department of Science, Information Technology, Innovation and the Arts, Chronic Fatigue Syndrome (CFS) is estimated to affect as many as 250,000 Australians.  ME/CFS Australia (SA) claims 90 per cent of these patients have not been diagnosed and are not receiving sufficient medical care.  Its symptoms include, but are certainly not limited to, unrelenting exhaustion, chronic muscular pain, fatigue following physical activity, unrefreshing sleep and the dreaded ‘brain fog’, a form of cognitive impairment that makes studying with a hangover feel like a breeze.

If that sounds like too rosy a picture, the real upside of this entire situation is that there is absolutely no cure.  In other words, doctors don’t know shit.  In the six years that I have struggled with chronic fatigue, I have only met two doctors that have not dismissed my complaints as all part of the ‘adolescent experience’. Have you had glandular fever or made out with anyone ever? Yep, that’s why you’re tired.  The truth is, Australia does not take CFS seriously and it is not doing enough to make a cure a reality.

The scepticism surrounding this disorder is so ubiquitous that the Institute of Medicine, a branch of the National Academy of Sciences and a hugely influential voice in American medicine, recently proposed that the syndrome now be termed Systemic Exertion Intolerance Disease (SEID).  And whilst the name doesn’t exactly roll of the tongue, it is a leap in the right direction.

The report, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, recently released by the Institute of Medicine, made it very clear that simple fatigue wasn’t the only disability patients with CFS face.  The report was essentially 200 pages of validation.  It referenced patients with a range of debilitating symptoms from unusually high standing heart rates and low blood pressure to those poor souls who cannot even bear a shaft of sunlight.  Too often I caught myself nodding my head in fierce agreement as I read through it. If nothing else, the report gave a voice to sufferers around the world. By re-evaluating the very definition of the disease, this report made it infinitely easier for sufferers to recognise that what they feel is real.  Not only this, but it will allow doctors to more easily diagnose and provide proper medical treatment for these patients.

So why hasn’t Australia done the same?  The Royal Australasian College of Physicians (RACP) argue in the Medical Journal of Australia that CFS has no known pathophysiology and, therefore, cannot be defined as “a specific ‘disease’ entity at present”. They argue that an illness is a ‘subjective experience of suffering’ whilst a disease has a biological basis.  The report then proceeds to justify its terminology by outlining how debilitating CFS can be despite the fact that it is only termed as an illness.  The need to clarify the seriousness of the “illness” illustrates exactly why the trivialising terminology should be changed.  Until the disorder is taken seriously, funding for research into effective treatments and pathophysiological underpinnings will remain lacklustre.  However, it seems as though CFS won’t be taken seriously by the RACP until those very underpinnings are discovered.

If this all seems especially antiquated, you would be right. This article, “primarily aimed at assisting general practitioners… physiotherapists, occupational therapists, psychologists and social workers” was written in 2002. It hasn’t taken into account recent statements from researchers at the Center for Infection and Immunity at Columbia University claiming that there is “robust evidence” that CFS is biological and not a subjective experience. It hasn’t taken into account research from Bond University that found significant differences in immune cells in CFS patients that could potentially lead to the identification of biomarkers for the disorder. It hasn’t been updated in 13 years.

The result? Stagnation, rising numbers of sufferers and year-long waiting lists at the two specialised clinics in Brisbane and Melbourne.

I’m tired, but I’m not giving up yet.  Let’s get the RACP to re-evaluate CFS in light of recent research.  Let’s stop turning away patients because we believe that their suffering is a subjective experience.  Let’s open up more clinics and raise more money for further research.  Come on, Australia.  Give us a chance to find a cure. Just maybe make the name a little catchier than SEID.

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