Jennifer Brea was a 28-year-old freelance journalist pursuing her PhD at Harvard when she fell ill with a fever after a hiking trip to Kenya.
When she later discovered she was suffering from ME, aka myalgic encephalomyelitis (once called ‘chronic fatigue syndrome’) she began documenting her experience on her phone.
The recordings became the documentary film Unrest, which is screening at this year's New Zealand International Film Festival.
Once the fever lifted, Brea immediately knew something was wrong.
"I started feeling really dizzy, and I would walk into door frames… had a really hard time getting around.”
She recovered and felt fairly normal, but in the year after kept getting sicknesses which included neurological symptoms.
Her GP told her it was impossible that anything was wrong with her immune system.
“He said ‘I’m confident in my training. My training has taught me everything there is to know about the known world, therefore, I see this thing that is happening in this young person. She’s probably just stressed out, it’s probably just final exams or something like that.”
It was difficult knowing something was wrong but not what, Brea says.
“The sad thing is I had ME from the moment that I had that fever – but a mild case”
This meant meaning at that time she could function in the world, but with limits.
“I truly believe that if I had had early diagnosis and been able to work with a doctor who could show me ‘Here are your limits. You can exercise, but you have to be careful not to go beyond your limits’; then it’s possible I would never have gotten as sick as I got or become bedridden.”
When Brea was so sick she was unable to get out of bed, she was finally referred to specialists, one who suggested she had ‘conversion disorder’ – the current medical term for what was historically known as 'hysteria'.
As a student of statistics who was being trained to think as a scientist, Brea says she didn’t initially reject that, or any other, hypothesis.
“I kept telling myself I’m feeling this pain in my legs or I’m feeling these symptoms, but maybe they're not real or they don’t have a real cause."
It wasn’t until she collapsed and spent months in bed that she went online to “aggressively” seek out other answers.
Online, she found videos of people who'd been diagnosed with ME talking about experiences identical to her own.
Any life-changing illness can be catastrophic, but with ME, on top of physical disability you have to live with doubt and stigma and the sense doctors don’t know whats going on, Brea says.
“Because I didn’t fit a disease picture that they had been trained to recognise and diagnose, often times I was told either that I wasn’t really sick, that what I was experiencing wasn’t happening or that it was all in my head.”
She started losing the ability to read and write and couldn’t keep a diary so reached for her phone to document what was happening.Brea says she started filming and recording her story because she was scared.
At her sickest walking to the kitchen would send Brea's heart rate up to 140 beats per minute and then she'd end up bedridden for days, weeks or even months.
“I knew that something was going on and I had this instinct my life was never going to be the same but I didn’t know what was going to happen next.”
As friends moved on with their careers and starting families, Brea and her husband Omar felt stuck and she began ‘constantly grieving’.
In the early days, she repeatedly told Omar he could leave her if he wanted to.
“I had this sense of immense grief that I was ruining his life, that by forcing him to be in this role of a caretaker I was going to prevent him from realising his own dreams.”
ME can come on gradually or suddenly but often follows an acute infection, which is often viral, Brea says.
The cardinal symptom is what is known as post-exertional malaise (PEM).
“Basically that means is I have a metabolic limit, and that limit can vary day to day and it varies person to person. But every cell in my body is struggling to create energy, and if I demand more from my body than it can give, I crash and all of my symptoms get worse.”
Common ME symptoms include postural orthostatic tachycardia syndrome (POTS) in which blood flow is insufficient when you stand up, neurological problems and an immune system which has a hard time suppressing viruses.
Many ME suffers have low natural killer (NK) cell function, which affects the body’s defences against viral infections and cancer, Brea says.
Her own NK cell function is almost zero.
Brea is cautious to talk about what has helped her combat ME symptoms because different things will help different people, but two antiviral drugs which came out of AIDS research now help keep her out of bed, she says.
She also takes Mestinon – a drug that combats muscle weakness.
“I share that not to say these drugs are the answer, but to offer hope and say there are probably drugs already on the market that have been developed for other conditions that could right now improve the quality of life for people living with this disease. And we’re not trialling them, we’re not studying them and getting people the help that they need now.”
The process of translating scientific research into medical education and clinical care takes around 20 years, she says.
“I think that’s the gap [ME sufferers] are fighting.
“We need to a lot more research to understand which treatments help which people."
Brea says it took her years to be able to even say 'myalgic encephalomyelitis'.
She uses 'ME' for now, but as the condition is better understood it may get a new name.
The label ‘chronic fatigue’ is stigmatising and profoundly misleading, she says.
“This disease is not really about fatigue or tiredness, it’s about that experience of metabolic limit, that post-exertional malaise.”