Jenny Meagher likens living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME-CFS) to waking up every day with the flu and hangover combined. Headaches, body aches, fever, and “cognitive dysfunction”, a term she uses in favour of “brain fog”, are just a few familiar symptoms she experiences daily.
Once an active swimmer, runner and bush walker, Meagher says her life has deteriorated into a “lifelong lockdown”, where she is bedridden most days with the occasional fortnightly outing. Even then, two hours is all she can manage before she pays the painful price of a long, arduous recovery.
“It completely dominates my life. I don’t really socialise often because it costs me 24-36 hours of pain in my brain and whole body,” Meagher said.
Meagher, 58, has lived with ME-CFS for almost 30 years since she was first diagnosed in 1994. She considers herself lucky to have been diagnosed so early because it takes five years on average for adults to receive a diagnosis.
“I used to sit at work and think, I just feel terrible… I’m so exhausted.”
ME-CFS is a complex and debilitating disease affecting an estimated 250,000 Australians, of which a staggering 75 per cent of cases affect women and 25 per cent are house or bedbound and dependent on carers.
It’s characterised by post-exertional malaise (PEM), whereby symptoms such as fatigue, pain and cognitive impairment worsen following physical or mental effort.
The ‘revolving door’ of getting a diagnosis
What’s perhaps more concerning is that this illness, which affects up to four times more women than men, has been historically ignored in research.
Experts agree it’s a burdensome process getting a diagnosis for ME-CFS, given there isn’t a clinical test to categorically diagnose patients.
Associate Professor Mark Guthridge, a senior researcher at Deakin University, says there’s an urgent need for research to identify new diagnostics, new treatments and new outcomes for people living with ME-CFS.
He says the research still has a way to go, but that it’s “quite well established” ME-CFS is a physical disease, often post viral, originating from a “biological defect” involving “hormonal and metabolic imbalances” among other biological factors.
“Patients have long voiced their issues with not being recognised, not having a disorder, being dismissed, marginalised, and going through the revolving door of trying to get a diagnosis,” he said.
He says recognition from wider society that this illness is real, debilitating and has severe impacts on quality of life, is crucial to helping patients get a diagnosis.
“Even though ME-CFS is more prevalent than multiple sclerosis (MS), motor neurone disease (MND), and Parkinson’s disease (PD), the funding is a fraction of what’s devoted to these diseases.”
The lack of research has also meant that there is limited training for health professionals to safely support people with ME-CFS.
Dr Richard Schloeffel OAM, the Medical Director of Emerge Australia, says funding for research into ME-CFS is urgently needed so patients are managed safely. Emerge Australia is a national charity supporting patients with ME-CFS.
“Currently there is no known cure for ME-CFS. There is a vital need for information about how to accurately diagnose and manage patients to prevent the illness getting worse,” he said.
The ‘catch-22’ of stigmatisation and dismissal
Meagher says she’s experienced a deterioration in her condition since she was first diagnosed.
She recalls a recent trip to her GP, prompted by enhanced symptoms and a woozy sensation in her brain. She can usually just manage the short three-minute drive to the clinic. But on this occasion, she felt so unwell that her husband accompanied her.
Slumped in front of her GP, she was told repeatedly that she looked more sick than usual and that perhaps she was putting on a show of worsened symptoms in front of her husband.
“Because I was so sick, my brain was functioning in slow motion. I could barely comprehend what was being said, let alone defend myself,” Meagher said.
Exhausted and humiliated, Meagher resigned to the familiar dismissal of her symptoms as her husband jumped in to defend her.
It’s not the first time she’s been dismissed. She recollects another instance where she was advised by an allergy specialist to “focus less” on her symptoms to feel better.
“The catch-22 is that if we explain the illness and insist that it’s a physical illness, we are accused of being hysterical and emotional. If we say nothing, they still think the illness is somehow psychosomatic. We can’t win.”
Meagher says her stories echo those of so many others living with ME-CFS all over the world. She is deeply ensconced in the patient community and says it’s a common theme in Facebook support groups.
The dismissal of ME-CFS as a legitimate disease has been documented extensively, leading to stigmatisation that the illness is purely psychological.
It’s also indicative of a wider trend in medical research where gender bias dominates diagnosis, treatment and outcomes for patients. Research shows women are more likely to be told their symptoms are psychosomatic and prescribed psychotherapy than men.
Outdated guidelines are ‘dangerous’
Australia’s national management guidelines for GPs treating ME-CFS are 20 years out-of-date and include a recommendation that patients can recover through graded exercise therapy (GET).
Like many others, Meagher tried graded exercise therapy (GET) on the advice of her GP, desperate to get back to her beloved exercise. She was working part-time until she noticed she started to feel worse.
“I got sicker and haven’t been able to work since. That’s how dangerous these guidelines are,” she said.
GET is a controversial treatment based on findings from a clinical trial in 2011, which has been found to be flawed due to the serious harm it causes some patients. At the time, it fuelled debate as to whether ME-CFS was a psychological condition.
The US Centers for Disease Control and Prevention discontinued this recommendation in 2017.
In October last year, the UK’s National Institute for Health and Care Excellence (NICE) scrapped recommending GET in their management guidelines.
But Australia is yet to follow suit.
Long Covid research is now ‘really important’
Rising Long Covid cases are shining a light on those with ME-CFS, with symptoms of long-term fatigue, sleep disruption, gastrointestinal disruptions, muscle pain (myalgia) and cognitive dysfunction bearing a striking resemblance to symptoms characteristic of ME-CFS.
Though it’s early in the research, Guthridge says the symptoms of Long Covid are very similar to those experienced by people with ME-CFS.
“Before Covid came along, ME-CFS was already prevalent. The Long Covid research is going to be really important because we can apply what we learn from Covid to ME-CFS”, he said.
Anne Wilson, CEO of Emerge Australia, says Emerge Australia has experienced an 100 per cent increase in calls for help during the last two months.
“Failure to invest more in prevention and management of ME-CFS could double the number of Australians with ME-CFS to 500,000, according to recent forecasts, which could have a major impact on the health budget,” Ms Wilson said.
For Meagher, having ME-CFS more widely recognised would be life-changing.
“The problem is that we as patients are completely powerless. The best we can hope for is a doctor who just believes that ME-CFS has a pathophysiological basis and that we are not hysterical women.”
Featured image: Jenny Meagher lies propped up in bed with her faithful companion, Alfie. Photo: Lara McCluskey.
