Author: Anthea Rowan
Twenty million people suffer from myalgic encephalomyelitis, yet there is still no test for it, nor any approved treatment. We talk to a mother whose daughter has the illness, and who has consulted dozens of doctors in search of help
Until my friend Caroline introduced me to myalgic encephalomyelitis, or ME, I didn’t know much about it. It was yuppie flu, a sort of tired opting out of life, I thought. And until she had to acquaint herself with the illness, Caroline didn’t know much about it, either.
“What I did know was vague; I had no understanding of it,” she recalls.
Three years ago, after contracting meningitis, her daughter, Saskia, just 20 at the time, succumbed to the illness. Since then Saskia has been mostly confined to bed and Caroline, as her primary carer, has had to try to understand an illness most doctors still know little about.
ME is also known as CFS, for chronic fatigue syndrome, another name that does nothing to dispel the connotations with laziness and self-pity that its other name, yuppie flu, evoked when the first reports of the illness emerged two decades ago.
UK-based NGO the Grace Charity for ME does the best job of describing the illness by breaking the name down into simple parts to demonstrate the ghastly breadth of issues thrown up by the condition, which affects multiple organs of the body.
This is its explanation: “My-” refers to muscle; “-algic” means pain; “Encephalo” means brain; “-myel-” refers to the spinal cord; and “-itis” stands for inflammation.
ME can be triggered by many things, most often an infectious disease – meningitis in Saskia’s case. It presents itself as a multi-system illness, affecting not only the neurological system but also the immune, musculoskeletal, endocrine (hormonal) and cardiovascular systems. There is still no test for it, nor any cure or approved treatment.
Ron Davis, a professor of biochemistry and genetics and the director of the Stanford Genome Technology Centre at Stanford University in the United States, is working against the clock to find one. His son, Whitney, is severely ill with ME and cannot move, speak, or eat. Davis heads up the End ME/CFS Project with the Open Medicine Foundation (OMF) – which makes its data freely available without waiting for the publication of academic papers – and he has on his team three Nobel Prize laureates and six US National Academy of Science members.
Worldwide, there are an estimated 20 million people living with the condition – the “missing millions” as they have become known, since they have been forced to drop out of everyday life.
The disease is fraught with challenges that go beyond finding a definitive diagnosis and cure. Few doctors understand it, even though it is recognised by the National Institutes of Health (NIH) and the Centres for Disease Control and Prevention ( CDC) in the United States, which has just posted extensive content aimed at helping health care providers diagnose and care for ME/CFS patients.
It is endorsed as an acquired complex disorder by US non-profit patient advocacy group the National Organisation for Rare Disorders (NORD), but it is often still dismissed in the medical world as being “all in the mind”.
Despite the number of people the illness affects, there are only a handful of doctors who understand anything about it, even in the United States – as few as 15, says Linda Tannenbaum, who works with Davis at the OMF and whose daughter also lives with the condition. Sufferers and their carers, like Caroline, are hugely challenged.
“Friends say, ‘Oh, take her to this clinic or that’,” Caroline says. “But this is a girl who cannot be on her feet for more than 10 minutes in the day; the logistics would be a total nightmare.”
Tannenbaum knows that it is often almost impossible to move ME patients who are weak, even if there were an expert on hand who could help. Sufferers whose specimens have been collected for the OMF study have usually been tested at home.
Caroline has sought the advice of dozens of doctors. This isn’t unusual. Dr Sue Jamieson at Hong Kong’s Integrative Medical Practice – who describes ME as a multifactorial condition that can even strike down healthy, athletic people – says the patients who seek her out have usually seen at least three other doctors.
Caroline describes her own journey to find the right doctor for her daughter. “A neurologist ran bloods and said they were fine. Another told me to see a counsellor – she advocated CBT [cognitive behavioural therapy].”
Today sufferers are advised to wear a FitBit to understand the tiny window within which their heart rate does not rise dangerously and they can function. Caroline says it is managing and being ever mindful of this that is both important and terrifying.
“You have to think of energy expenditure as a teapot with three spouts – physical, cognitive and emotional. And you have to manage all three and keep the teapot partially full.”
Scientists believe the illness operates at a cellular level, with research suggesting ME causes cells to leak energy – leading to crushing exhaustion. Just imagine a cell punctured so that it cannot hold onto the oxygen and glucose the body needs to function at a healthy level.
In the absence of a known treatment despite some of the best brains in the business rushing to find one, Caroline has tried an exhaustive, and exhausting, list of things, from the orthodox to the outlandish, in a desperate bid to make her daughter better.
Saskia’s diet is carefully monitored because, as Hong Kong-based naturopath Sara Jefferson says: “Certain bacteria have been associated with autoimmune illness and fatigue, [hence] the health of the whole of the gastrointestinal tract (GIT) is imperative.
“Almost all of my ME patients have some dysfunction of the GIT, including poor levels of stomach acid and digestive enzymes, leading to malabsorption of nutrients and intestinal permeability, commonly known as ‘leaky gut’.
“Diet is tremendously powerful in helping heal the digestive tract, and often a change of diet makes the biggest improvement on the road to recovery.”
In addition Saskia has had homeopathic treatments, and taken hundreds of dollars worth of expensive vitamins and minerals, which only served to irritate her gut. She tried low-dose Naltrexone, which has been effective in pain reduction in lots of illnesses and is often prescribed to ME sufferers, but in her case did nothing. Weeks in, she began to turn yellow, suggesting her liver was affected.
“I have spoken to dozens of neurologists and pain management doctors. They don’t reply after the first few messages,” Caroline says – because they don’t have answers.
The illness is unquestionably misunderstood, says Professor Richard Fielding, a clinical and health psychologist and until recently professor of medical psychology in public health at the University of Hong Kong.
“Part of the problem is that ME/CFS overlaps with many other potential conditions that produce fatigue and or long-standing discomfort. It is reminiscent of the old diagnosis used until recently of ‘rheumatism’ as an explanation for aches and pains.”
Tannenbaum says the added difficulty for sufferers and their families is that the misunderstanding promotes stigma – as Aids did once.
“What other illness has presented like ME – elusively – aside from Aids?” asks Tannenbaum (and it seems inconceivable today that we could once have dismissed Aids as not real). Multiple sclerosis, she says, was dismissed as “hysteria” until the invention of the CAT scan in 1972, and diagnoses that the illness was for real.
Aids was once ignored, and dismissed as a disease of minorities. Today US$2,500 is spent per patient in the US, as opposed to a pitiful US$2 for ME. Tannenbaum says advocates for ME patients are seeking the support of the Aids advocates of yesterday “to understand how to get the ME message out”.
How do you cope, I ask Caroline, with the exhausting present of caring for a sick daughter while facing a terrifying future – not knowing when there will be answers, or when she will get better?
Distractions are essential she says, as are friends. And hope.
“I have to hang onto that,” she says.
Permission to share article granted by the author. Original publication can be seen here.