The Other M.E.

Myalgic Encephalomyelitis is a complex and debilitating condition affecting multiple bodily systems. It's been classified as a neurological condition by the World Health Organisation since 1969.

"Inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, or patients with multiple sclerosis.”

-Dr. Nancy Klimas

Frustratingly, the diabolical term 'Chronic Fatigue Syndrome' and the compromise conflation 'ME/CFS' are also used. 'Chronic Fatigue Syndrome', with its trivialising and misleading emphasis on the single symptom of fatigue, was coined in the 1980s in the USA, after an illness outbreak in Lake Tahoe. It was a blunder that has had serious consequences.

“The invention of Chronic Fatigue Syndrome has to be one of the most curious cases of inventive American scientific imperialism that one could imagine.”
-Dr. Byron Hyde

The name ‘CFS’ is almost universally disliked by patients and their clinicians, who liken it to calling Parkinson’s ‘Chronic Shakiness Syndrome’, Diabetes 'Chronic Thirstiness Syndrome', or Polio ‘Chronic Stiffness Syndrome’. For many of us, fatigue isn’t the defining or most disabling feature of the condition.

“I have evaluated over 2,500 cases. At worst, it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months. 80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self.”
-Dr. Paul Cheney

More than an initial problem of terminology, CFS is now a problem of definition. The US CDC has belatedly acknowledged the differing definitions of ME and CFS: “ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”

Unfortunately, CFS has ended up as an umbrella term to enable researchers to cluster people within a spectrum, rather than a precise disease classification. There are multiple different research and clinical definitions of CFS worldwide, some being very broad. Several of the definitions fail to exclude significant psychiatric illness as a cause of fatigue, and very importantly, don’t include the hallmark symptom of extreme post-exertional malaise as necessary for diagnosis. The patient population diagnosed with CFS internationally is heterogeneous and this confounds research.

Inconsistent research data means that some of the information available on managing the condition is appropriate and helpful, while other approaches (graded exercise, cognitive behavioural therapy, somatisation or deconditioning theories), geared towards people with idiopathic chronic fatigue, are inappropriate and have the potential to cause illness progression.

All this has caused confusion, misunderstanding, and relapses. (I’ve been there and bought the t-shirt.)

"I had no idea that my place in epidemiological and cultural history would play a giant role in the was my illness was perceived. I simply collided with a pathogen. In 1992, on a day in May, the sky started spinning."
-Peggy Munson

To understand more about the complex issues surrounding the names and definitions, there's an excellent short history of ME on the Western Australian ME Society's site.

In practical reality in Australia, patients and doctors alike often use the terms ME, ME/CFS and CFS interchangeably to navigate the health-care system, although obviously depending on definition, they aren’t necessarily synonymous. It’s an awkward situation.

Whatever the diagnostic label, it’s important for patients to be well-informed, discerning and pragmatic to ensure they access and implement the best medical advice possible.

As far as resources to assist in managing the condition, the controversial 2002 Australian RACP Guidelines were based on the oft-lambasted US CDC definition of CFS. Many Australian clinicians treating people with ME/CFS spoke out against these, and along with the Australian ME/CFS Societies, endorse the Canadian ME/CFS Guidelines instead. The Canadian Guidelines are based on 20,000 patients worldwide, and are the best mainstream guidelines currently available. The 2004 South Australian ME/CFS Guidelines are based on the Canadian Guidelines but are much shorter, being created by and for busy GPs.

If you’re interested in further reading, check out these links.

“This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterisation.”
-Laura Hillenbrand

[image by Rachel]