Despite world-class research into chronic fatigue syndrome being undertaken nationally, government funding and support for sufferers is grossly lacking. By Sylvia Rowley.
Rethinking chronic fatigue syndrome
“I’m typing this lying in my dark bedroom with my eyes closed, on a dark screen with earplugs in,” writes 45-year-old Anna Kennedy, a Melbourne-based clinical psychologist, in one of our first email exchanges.
“It’s a rotten place for me to be as I’m a relater at heart. I love conversations. I find people fascinating, always have. It’s like being in a prison, having ME.”
Kennedy hasn’t worked for five years, since becoming severely ill with the complex neuro-immune condition myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).
When I visit the home she shares with her husband and two sons in the northern suburbs, Kennedy talks to me while lying on her sofa under an electric blanket, with her dog, Rufus, sleeping at her feet. She’s struggling to sit or stand up much at the moment.
About 100,000 to 240,000 people in Australia suffer from ME/CFS, according to estimates based on global statistics. About a quarter are severely disabled and unable to leave the house, while at the other end of the spectrum about a seventh are able to work, at least part-time. The condition often begins with an infection or other trauma, and affects multiple systems of the body including the brain, nervous system, gut and immune system. One of the key markers of the illness is a worsening of symptoms after physical exertion, which can take days or weeks to improve.
When she’s at her worst, Kennedy has difficulty talking or processing information, and is completely bedbound. She calls it her “ragdoll” mode. For two years she had 24-hour nausea; noise, light, movement and sound sensitivities; head and spine pain; flu-like symptoms; could hardly stand up; and lost the ability to digest food properly.
“I would never describe this as fatigue,” she says ruefully.
Scientists’ understanding of what is actually going on in the bodies of people such as Kennedy has so far been extremely limited, but Australian researchers are now playing a part in unearthing clues.
“We’ve got a long way to go, but we’ve made base camp,” says Professor Donald Staines, co-director of the National Centre for Neuroimmunology and Emerging Diseases at Griffith University in Queensland.
One of the main pieces of ME/CFS research to come out of Australia recently is a series of papers by the team led by Staines and co-director Professor Sonya Marshall-Gradisnik, showing abnormalities in the genetic make-up and function of the immune systems of people with ME/CFS.
In research published during the past 12 months, the team found genetic mutations in the “threat receptors” of certain white blood cells in ME/CFS patients, and changes in the functions that these receptors control, such as energy production inside the cell. They also confirmed that immune cells affected by these changes fail to fight infection and cancer as well as they should.
The discovery of these faulty receptors may also have wider implications. “Nerve cells, muscle cells, pancreatic cells, intestinal cells, you name it, they all have these receptors in them,” he says. “And if these same changes [that are happening in white blood cells] are happening in every cell in the body, then the whole body is going to respond abnormally.” This could explain the complex and varied symptoms of ME/CFS “a huge amount”, says Staines. The team is in discussion with companies about producing a diagnostic test for the illness based on their findings.
“The research is really taking off,” says Sally Missing, president of ME/CFS charity Emerge Australia. “There’s quite a lot of momentum nationally and internationally, with a number of groups announcing that they’ve found biological markers [for the illness] just in the past few months. But there are still huge gaps, and serious underfunding of research in Australia.”
Earlier this year, after questioning from Senator Scott Ludlam, health bureaucrats revealed that the National Health and Medical Research Council (NHMRC) has spent $1.6 million on ME/CFS research since 2000. In comparison, it has spent more than $47 million on multiple sclerosis since 2002, which affects fewer than a quarter of the number of people who suffer from ME/CFS, and has been found in a recent study to have less of an impact on quality of life.
“Although there’s world-class research being done here, it’s completely unsupported by the Commonwealth government,” says Ludlam.
This lack of research funding is accompanied by a dearth of support and care for patients, he says. “It’s extraordinary neglect. By and large the medical profession still seems to be working in the dark, and huge numbers of people aren’t being helped.”
The NHMRC has no current clinical practice guidelines on ME/CFS for doctors, and the illness was not named in the Australian government’s latest Australian Burden of Disease Study, published in 2016, because there is no “recent robust data” on how many people have it. Education for doctors is minimal, and Australia’s largest ME/CFS charity is run by two part-time workers.
As a result, many patients have faced dismissal or disbelief by doctors. Back in Melbourne, Kennedy gives one example of a cardiologist who told her that her symptoms were psychosomatic – caused by mental distress. “She diagnosed me with a very rare, complex psychological condition, within a few minutes of being in her office,” Kennedy says. “As a clinical psychologist, that astounded me.”
This year, Kennedy and a group of others with ME/CFS decided to get politically active to protest at the lack of funding and recognition. In May, they took part in a global #MillionsMissing event, to protest the millions of dollars missing from ME/CFS research, and the millions of people around the world missing from their lives. They did this under the banner of a new patient-led online movement called #MEAction, that’s emerged from the United States.
“There’s a mass feeling now that everyone is fed up!” says Karyn Adams, who has ME/CFS and led the protest in Melbourne. “People are putting their health at stake to try to do things to make a difference.”
The group collected 320 pairs of shoes belonging to Australians with ME/CFS and lined them up outside the State Library of Victoria, in Melbourne, as part of a global day of action.
“A lot of us are too sick to show up physically to a protest … this gave us a way to represent people who were too ill to leave their homes or beds,” says Adams. “We had an incredible response on the street.”
Several of the organisers helped plan the event from their beds, including Kennedy. She attended the protest in a wheelchair. “The experience was so affirming for me; to be in that space with other patients, and to be working with them on a collective goal,” she says.
The newly formed #MEAction Australia group is now devising its advocacy strategy for working with politicians and others. But despite believing activism is her best shot for changing her situation, Kennedy is unsure if she’ll be able to carry on: the work she put into planning the event took a heavy toll.
“I’ve hardly been out of bed for six weeks,” she says. “I’ve been cognitively terrible, my son’s talking to me and nothing’s going in. I want to do more activism, but I just don’t know how I’m going to do it and still be a mum, still be there for my family.”
This article was first published in the print edition of The Saturday Paper on August 6, 2016 as "What about ME?".
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