Yes, it's real. No, it's not laziness, or "being tired".

Do you remember when you ran a marathon, drank a bottle of vodka and woke up with a hangover compounded by the flu? Hopefully not. But imagine waking that way every day, and you’ll have some idea of what it feels like to have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

In 2005, I was a full-time media undergrad with two part-time jobs and plans to spend a gap year teaching English in Japan after graduation. The sudden onset of marathon-vodka-flu was a terrible inconvenience.

I managed to graduate with a few extensions, but as time went on, and I did not recover, Japan evaporated as an option. I gave up one job, then the other, gradually ceding my hard-won independence to the insidious illness. I moved in with my Dad and rarely left the house. Short walks to local shops were, by then, a struggle, and every bit of exertion required recovery time. My social life became limited to people who came to visit. My body felt so consistently awful I wondered if I was dying.

Eight months of fear, frustration and a host of confused (but shockingly dismissive) specialists later, I got a diagnosis: Chronic Fatigue Syndrome.

No, I thought. That can’t possibly be what I have. This isn’t just “fatigue”.

Then I read the diagnostic criteria.

There was no cure, no straightforward treatment, and little to suggest recovery was likely. This was not a blip. I would not be returning to my life. Worse, I would be forever stuck with the “fatigue” label, and I knew immediately what that would mean — how I would be viewed.

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What’s In A Name? A Brief History Of ME/CFS

The term Myalgic Encephalomyelitis (say it three times fast) was first coined in 1955 during an outbreak of an unknown debilitating illness in a London hospital. It was classified by the World Health Organisation as a disease of the central nervous system in 1969.

In plain English, the term means muscle pain, brain and spinal cord inflammation. Symptoms included memory and cognitive impairment, balance problems, sleep dysfunction, an inability to regulate temperature, muscle pain, headaches, sensitivity to light and sound, digestive problems, dizziness, cardiac irregularities, heavy limbs, increased sensitivity to chemicals and medication, and, of course, unusual fatigue. Many original sufferers were severely restricted in activity (some struggling to sit up, eat or talk), and few recovered.

M.E. was diagnosed based on history, symptoms and a process of elimination, as a single diagnostic test was yet to be found. To this day, there is no such test. Research slowed to an unfortunate trickle in 1970 when psychiatry student Colin McEvedy published, in his words, “an easy PH.D”, framing the hospital outbreak as “hysteria” without interviewing a single patient. McEvedy’s work was widely publicised and changed how M.E. was viewed by the medical establishment, deeply undermining the credibility of desperately ill people.

The term ‘Chronic Fatigue Syndrome’ came into use in 1988 after another outbreak in the U.S. A CDC committee sought to define the illness and came up with, arguably, one the most inadequate descriptors in medicine. ‘Chronic Fatigue Syndrome’ is the rough equivalent of renaming Parkinson’s ‘Chronic Shaking Syndrome’. As popular novelist Laura Hillenbrand has stated: “Fatigue is what we experience, but it is what a match is to an atomic bomb.” Hillenbrand herself is almost housebound with the condition.

The new name came with new diagnostic criteria, which was quickly critiqued for focusing too heavily on fatigue as a symptom. ME/CFS researcher and treating physician Dr. Byron Hyde described it thus:

“[The] CDC 1988 definition of CFS describes a non-existing chimera … a mix of some of the least important aspects of M.E. and what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance.”

The perceived inadequacy of this definition resulted in a slew of attempts to redefine the illness. We now have the 1994 CDC Criteria, the Oxford Criteria, the London Criteria, the Canadian Diagnostic Criteria, the International Consensus Criteria, and the IOM Criteria for SEID (Systemic Exercise Intolerance Disease). Other names include CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), PVFS (Post Viral Fatigue Syndrome) and the commonly used ME/CFS.

With so many definitions in circulation, some vaguer than others, it’s possible those now diagnosed with ME/CFS are actually experiencing a range of conditions. This makes progress on developing effective treatments slow. Frustration amongst ME/CFS sufferers is palpable.

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Living With Chronic Fatigue Syndrome

Despite recorded outbreaks, there’s no evidence that ME/CFS is actually contagious. We’re on the Do Not Give Blood list due to a thoroughly debunked theory about retroviruses, but we don’t seem to be passing the favour on. It’s considered likely that genetics, combined with a challenge to the immune system such as a virus, sets the disease in motion. Much more study is needed.

But what’s it like to live with?

It’s important to remember that ME/CFS comes in varying levels of severity, ranging from “I can work full time if I pace myself” to “I can barely move and mild sensory stimulation causes me intense pain”. According to leading advocacy organisation Emerge, up to 25 percent of people with ME/CFS are house or bed-bound. Care needs vary wildly, and the state of the condition may or may not change unexpectedly.

That variability is, for me, the most difficult thing about life with ME/CFS. I have management strategies; avoidance of chemicals, dietary changes and pacing being the most effective, but I still bounce unexpectedly between periods of working part time and periods of struggling to be upright. Sometimes it’s as though my blood has been replaced with lead.

The grief and fear when you start to lose physical and mental function never gets easier. Over and over, I lose the freedom to earn a living, to be actively social, to get lost in distractions (books or games), to mentally and physically engage. You never know what might become permanent. You adapt, becoming comfortable with a new normal — most people with disabilities do — but then the recovery/relapse cycle starts all over again.

Adding insult to injury, there always seems to be social pressure to spontaneously recover, or at least to stop behaving like an ill person. Lack of awareness around ME/CFS, and an outward appearance of health, can result in serious misconceptions about what our lives entail. The lack of community empathy and acknowledgement can be just as demoralising as the symptoms.

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“Bugger All”: A Frightening Lack Of Research And Support

Put bluntly, Australians with ME/CFS are in crisis. Estimates of how many of us there are range from 92,000 to 242,000, and the absence of a more accurate figure reflects the general state of apathy regarding ME/CFS by our health authorities.

Advocacy groups such as Emerge and state based ME/CFS societies run on the smell of an oily rag. They provide excellent information and advice, but are rendered almost useless to patient groups in terms of practical assistance.

Greens Senator Scott Ludlam recently raised the question of how much Commonwealth funding goes into ME/CFS research with the Community Affairs Legislation Committee. The initial (very low) figure of $2.4 million over 14 years was quickly revised down to $1.6 million when challenged, but even this figure is debatable according to the breakdown of the funded studies on the Emerge website.

Senator Ludlam also noted the lack of any formal training for medical professionals, nurses or allied health services to appropriately support people with ME/CFS. In practice, this results in patients having difficulty getting diagnosed, and discrimination by out-of-depth doctors acting as gatekeepers to desperately needed services. There is a lack of support in claiming the DSP (Disability Support Pension) and arranging in-home GP appointments for house and bed-bound patients. Mention you have ME/CFS to hospital staff and the issue is likely to be sidestepped or dismissed. As most people with ME/CFS have adverse reactions to medications and extended recovery times after surgical procedures, this can have deterimental effects on care.

What Needs To Change?

Senator Ludlam raised two avenues for change with the Community Affairs Legislation Committee: “What would it take to get a clinical advisory group for ME/CFS?” and: “Could the Commonwealth Government find it in its heart … to support Emerge Australia?” With that, he identified the two areas where support is most needed: improved medical care and patient advocacy.

Support for a public awareness campaign would also not go awry, with an aim to improve interpersonal relationships with friends, family and employers, which can become strained by skepticism when straightforward information is not readily available.

I know I am waiting with bated breath to see how the committee responds. Because right now, as Senator Ludlam poetically stated: “They’re getting by with, basically, bugger all.”

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Naomi is a freelance writer, presenter and community television producer with a background in disability activism and feminism. She is currently editing her first short film.

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Feature image from Jem Yoshioka on a Flickr Creative Commons licence.