Chronic fatigue syndrome: Unrest explores a very misunderstood condition
Chronic fatigue syndrome – or Myalgic Encephalomyelitis, and commonly shortened to CFS/ME – affects an estimated 15 to 30 million people globally, including 250,000 in the UK.
That’s more than the 100,000 sufferers of multiple sclerosis (MS), an equally devastating condition, but one that has a greater understanding and potential treatments in the pipeline.
Unkindly branded ‘yuppie flu’ in the not too distant past, CFS/ ME has been stigmatised and ignored over the decades, despite being first identified as an illness by the World Health Organization back in 1969.
Sufferers were commonly told that symptoms – which included extreme fatigue, severe muscle pain and debilitating cognitive problems – were psychological, and all in their head.
Chronic fatigue syndrome: There are 15 to 30 million sufferers globally
My husband Omar and I both got sick with a virus when we were travelling. He recovered from the fever, but I began to develop strange flu-like symptoms.
However, the effects of CFS/ ME can be devastating – a quarter of patients are housebound or bed bound, meaning that they can often remain hidden to society.
Recent progress has been made after a ground-breaking Stanford study discovered the condition could be proved with a blood test.
Now a new documentary, Unrest, which won the Special Jury Prize for editing at the Sundance Film Festival earlier this year, aims to raise awareness of a very misunderstood disease.
Released in the UK on Friday October 22, it follows the story of its American director, Jennifer Brea, who was a 28-year-old PhD student at Harvard University when she became ill three years ago.
“My husband Omar and I both got sick with a virus when we were travelling. He recovered from the fever, but I began to develop strange flu-like symptoms, like feeling dizzy when I got out of bed,” said Brea to Express.co.uk.
“Over the next year I was still able to function – going travelling and bike riding – but I began to get sick every month from infections, and would have to spend days in bed.”
Chronic fatigue syndrome: Symptoms include severe muscle pain and extreme fatigue
Brea explained that prior to this she had lived a very active lifestyle without any problems and would only tend to get sick with an occasional cold at winter – she knew something was very wrong.
“I went to my doctor and said I think there’s something wrong with my immune system, but he told me my temperature was normal and everything else seemed fine,” she said.
“In between my increasing frequent infections I thought I could be normal too – thinking that it was something strange that just happened to me – but there was a pattern emerging.
“Then I stopped being able to be so athletic – I wouldn’t be able to complete a bike ride and I’d be left bed-bound if I tried skiing.
“Returning to my doctor, he once again told me I was normal and my tests were fine, suggesting that I was depressed, dehydrated or that it was all in my head. He couldn’t explain it to me.”
At this point she had mild CFS/ ME, where you might not even know someone is ill because they spend their evenings and weekends recovering from the normal demands of daily life.
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Chronic fatigue syndrome: Sufferers have often been told symptoms are psychological
Brea explained that on the other extreme to this sufferers were so unwell they could only be in dark rooms because they couldn’t tolerate sight, sound or touch.
“I was in the more mild end of the spectrum for that first year, but I didn’t realise that every time I was pushing myself physically – going skiing, riding my bike, teaching and pursuing my degree – and going beyond my limit I would crash,” she explained.
“I didn’t know what crashing was back then and just got worse and worse until a year and a half after that initial fever I became completely bedridden.”
A particularly moving scene in Unrest was watching Brea walk home from a neurologist’s office after he had told her she had conversion disorder, the modern-day name for ‘hysteria’.
“He told me that my symptoms were being caused by emotional trauma that I might not remember. It didn’t make sense to me or sound like science but I thought maybe I should see if he’s right,” she remembered.
“I walked home from his office, noticing the pain in my legs and the weakness and I started thinking is there some way my mind is creating this?
“And as soon as I got to the door I collapsed and had the worst fever I have ever had. I spent the next four months in bed.”
Chronic fatigue syndrome: Jen Brea developed symptoms when she was 28 years old
She does not blame doctors for the lack of knowledge about CFS/ ME, saying that they want to help but don’t have the tools or training to be able to.
“The core issue in this disease it that there hasn’t been the breadth or the death of scientific research that we see in hundreds of other diseases,” she explained.
“We don’t have the tools that there are if you were diagnosed with cancer or multiple sclerosis – devastating diseases that don’t have many options either, but there are tools.
“There is a narrative that CFS/ ME is so complex but if you don’t invest anything in the research then you can’t find anything out.
“Here in the UK there is still a large bias to a psychological explanation – while there people doing great work, the funding and public commitment isn’t where it needs to be because it’s a disease that has been so stigmatised and so invisible for so long.”
There has been progress in the last five years thanks to a resurgence of research happening at Harvard, Columbia and Stanford and a number of other universities.
Additionally, the Center for Disease Control in US has finally changed its guidelines so that it no longer recommends cognitive behavioural therapy and graded exercise, which science has shown could harm patients.
Chronic fatigue syndrome: Some sufferers can’t tolerate sight, sound or touch
Over the next decade there is likely to be much more understood about CFS/ ME and the powerful scenes in Unrest will certainly ensure that.
“The film came from two places. The first was when I realised, after struggling to explain my symptoms to my doctor, that the only way he could really understand what I was gong through was to show him a video recording I had made on my phone,” Brea said.
“I realised that perhaps it was something that needed to be explained visually.
“When your symptoms are moderate or mild because it’s a ‘good’ day that’s when you go in and see your doctor. They never see you at your worst.
“One of the reasons why we’re treated this way is because people don’t see us when we’re sick.
“I describe at has having a battery that’s only charged to ten per cent – as long as I stay in my limits, I’m normal. But if I exceed that my symptoms flare up, and I disappear to my bed.”
She finished by saying that the second reason she made the film was because she didn’t want another twenty-something didn’t have to go through the same thing: “I wanted to do everything in my power to change this”.
Unrest opened in the UK on October 20. Watch the trailer and find out more here.