Even the name worked against you. Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) combines the incomprehensible with the banal. Myalgic what? And fatigue … doesn’t sound so bad, as medical conditions go, right? For decades, people with the condition have lingered in a twilight of misdiagnosis and misunderstanding, where clinical treatment was either absent or actively harmful and government neglect was part of the larger void in understanding across our whole society.
The condition is described as “a complex, multi-system, neuroimmune condition with a multitude of symptoms related to the dysfunction of the brain, gastro-intestinal system, immune system, and endocrine and cardiac systems…”
The technical language only goes part way to describing a forbidding condition that afflicts people in wildly differing ways, with the common factor that rest doesn’t recharge your body properly. Sleep just doesn’t work. The symptom-set reads like a list of everything that could possibly go wrong with your health, starting with “overwhelming post-exertional malaise”. It can mean anything from having to take things a bit slowly to being permanently bed-ridden, shut off from all forms of stimulus; when even the effort required to process sight and sound can become overwhelming. Jennifer Brea’s 2017 film Unrest is a visceral account of a condition that descends from nowhere, for no apparent reason, with devastating effect.
Such a capriciously variable list of symptoms and severity has hampered effective diagnosis, so much that there is still no nationally agreed set of diagnostic criteria in Australia. But just has damaging has been a refusal to listen honestly to people with the condition. Two of the most popular treatments still recommended in Australia are graded exercise therapy, based on the idea that patients need to gradually increase their exercise, and cognitive behavioural therapy – counselling. This is despite international criticism of the research that endorsed these treatments, and widespread patient stories of dramatic worsening of health after attempting graded exercise therapy.
“Imagine if all we offered patients with cancer was exercise and counselling. That is the equivalent of what is happening to patients with ME/CFS in Australia today.” Sally Missing is the President of Emerge Australia, an organisation supporting people with ME/CFS. “Patients want biomedical research into effective treatments, education for doctors and medical staff, and access to information and government support services such as the NDIS which are currently being unfairly denied.”
Between 94,000 and 242,000 Australians suffer from the condition, and it affects four times as many women as men. There’s a hint right there that something is deeply amiss – we don’t even know to within the nearest hundred thousand people how many are affected. Two things are clear, though: one, it’s a lot of people. And two, they’ve had enough of being treated as though they don’t exist.
The first time I opened up the subject with the National Health and Medical Research Council (NHMRC) during a late-night budget estimates session in October 2015, it was disconcerting to discover just how sketchy the commonwealth’s role had been to date. No advisory role, no internal expertise, no funding for advocacy and only a tiny fraction of research funding on the books, most of which was later discovered to be for other conditions. The session was shared online more than the rest of that week’s estimates work combined: clearly, we’d hit a nerve.
And so over the last couple of years, something remarkable has been happening, as researchers close in on the genetic origins of ME/CFS, and patients, their families and supporters wage an increasingly effective campaign to bring recognition and visibility to the #MillionsMissing.
These two strands converged with the formation of an expert advisory committee within the NHMRC in late 2017, after a focused lobbying effort. The committee brings a mix of clinical and patient expertise to the task of directing funds towards the most prospective areas of biomedical research and developing nationwide guidance for doctors struggling to provide accurate diagnosis and appropriate treatment. It may, at last, lay to rest the notion that people are imagining their symptoms or that a few push-ups might help.
The #MillionsMissing campaign is all the more remarkable when you consider that the people most central to raising the condition into national and global prominence struggle with symptoms that can make even the most mundane of tasks challenging or impossible.
And yet, it is happening. Every 12 May, an increasing number of buildings and landmarks around the world light up blue. This year’s campaign “Can you see ME yet?” will run in cities around the world, including visibility actions around Australia, film screenings and a social media campaign.
Last week the Senate passed a unanimous motion calling for a unified research and advocacy effort. Community awareness of the condition has never been higher; the sluggish wheels of the bureaucracy are turning at last, and some of the world’s most gifted researchers have a diagnosis in their sights.
At the Gold Coast campus of Griffith University in Queensland, researchers Sonya Marshall-Gradisnik and Donald Staines have produced a stream of scientific publications identifying specific defects at the cellular level. Over time their research has singled out faulty chemical gateways in cell membranes – known as ion channels – as the key unifying factor underlying the bewildering variety of symptoms.
As Marshall-Gradisnik, an immunologist, points out: “There are profound deficits in these ion channels in people with ME/CFS. As these channels are more or less distributed in every cell in the body, particularly the brain, cardiovascular system, pancreas, and gut, they exert an extraordinary effect on functions in these systems.”
For Staines, a public health physician, the implications are clear. “We now have a tangible nexus between causality at onset, gene changes, receptor changes and clinical consequences. The implications are major, not only to develop a suitable test and pharmacological treatments, but also to show how interventions such as exercise therapy and behavioural therapies are wrong in science and in physiological terms, potentially harmful.”
None of this can happen too soon for those who have had to live with the isolation that such a punishing condition can impose. So when we light the place up blue on 12 May, it will be seen by more people than ever before. It’s one small way of saying to those who have waited so long for recognition and some hope of treatment: you’re not forgotten, you’re seen, and you’re dearly missed.
- Scott Ludlam is a Guardian Australia columnist
