Independent: Time for Unrest: Why patients with ME are demanding justice, by Nathalie Wright, 7 Jan 2018
A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients face to be taken seriously by doctors.
“I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.”
The film in question is Unrest, a documentary directed by and featuring Jennifer Brea, a former Harvard PHD student who, after developing the disease ME, started filming her experience. For those not directly affected by the illness, their go-to reference may be one of the many stereotypes that have proliferated in the British media: ME is “yuppie flu”; it’s an illness of lazy people or type-A personalities, malingerers, hysterical women, militant activists, scroungers, even people who are “a bit tired” and “don’t feel like going to work today” (according to a Ricky Gervais standup routine). For the first time, a major documentary is speaking back to decades of misinformation and showing what often doctors don’t even see: the daily life of sufferers, of whom there are about 260,000 in the UK.
Unrest follows Brea when she first becomes sick after a 40C fever. For the next year, she suffers repeated infections and her health declines dramatically. But doctors do not take her seriously – a state of play recognised by many young women who are dismissed by the medical system. When she finally sees a neurologist, he diagnoses “conversion disorder”. Hysteria. There must be a trauma that she can’t even remember. There is nothing physically wrong with her that could be causing her symptoms. And so, Brea decides to walk the two miles home – what could be the harm after all? When she arrives back, her brain and spinal cord feel like they are on fire. She is bed bound for the next two years and now, several years later, uses a wheelchair.
After eventually being diagnosed with ME, Brea was able to access some treatments in her native US, but there currently are no cures. Like most patients, an initial flu-like illness triggered the disease. Her symptoms include profound exhaustion (utterly unlike everyday “tiredness”), extreme pain and a worsening of symptoms after even minimal exertion – a symptom known as post-exertional malaise or PEM. ME, like autoimmune diseases, mainly affects women and is often developed in the prime of life, though children are also affected. Indeed, it is the biggest cause of long-term sickness absence from school. Since 1969, the World Health Organisation has recognised ME as a neurological illness although its precise mechanisms remain unknown.
The film features other stories too. Jessica, a young British woman spent four years from the age of 14 in hospital in a semi-coma because of ME. She improved slightly but was completely bedridden such that her feet didn’t touch the ground for years, during which time she grew four inches. “I’ve never stood up at my full height,” she explains matter-of-factly. In contrast, a very severe patient, Whitney, is completely unable to speak. He is so sensitive to stimulation that it is dangerous for others to even be in the same room as him. Fed by a tube in his small intestine, he passes his life in darkness and silence, unable to tolerate light or sound.
Such stories of extreme physical debility are not, however, the most shocking part of the documentary. What has prompted a global justice movement is the fact that many doctors still refuse to accept that ME exists at all.
The article gives a long but excellent summary of the history of ME in the UK and then looks at important research developments which have produced insights into the biomedical nature of ME, before focussing on the campaign:
ME patients have always had to fight for their rights, but now with the advent of social media, bed-bound patients are able to connect globally and a social justice movement is flourishing under the twitter hashtag #MillionsMissing.
For Jennifer Brea, ME activists can learn a lot from history.
“To fight stigma and to force the recognition from the health system, we need a movement for access to treatment, care and research. The HIV/Aids movement allowed extraordinary advancements in the space of a decade. That’s what we need here. It is about reclaiming our bodies and our experience; having a sense of pride in ourselves an in each other.”
And the movement is beginning to gather momentum. In the UK, the NHS has announced it will completely rewrite its guidelines for ME, after pressure from patients and concerned scientists. Medical research into biomedical causes is increasing, but remains seriously underfunded globally.
“It’s 30 years wasted, which is a long time in research terms. We could have discovered the cause of ME in that time,” laments health researcher, Dr Keith Geraghty.
Historically, people with ME have been excluded from the disability rights movements in the UK and did not have the lobbying power to affect government policy but disability and ME activists alike are starting to come together, uniting under the slogan: “Nothing about us without us”.
“ME activists are so distressed and angry because we’ve had our reality denied by almost everyone around us,” explains Catherine Hale, an ME activist and leader of the Chronic Illness Inclusion Project. “The dismissal of our testimony is profoundly distressing, you can develop a PTSD response from it. It’s a kind of abuse. A treatment approach that harms people by saying it is our mindset that needs to be changed is a very oppressive experience. As patients, we’ve all been so isolated and are too ill to go out and protest and that’s why the ‘Millions Missing’ is really in its infancy, because we’ve come from so far down.”
Adam Lowe, an author and journalist with ME is also demanding accountability.
“One of the most common misconceptions about ME patients is that we’re anti-psychiatry and resent all treatments that imply even a partially psychological cause for the illness. This is another myth that needs to be challenged. I’m a strong believer in adequate mental health provision for everyone as are most ME patients.
“We live with this illness in the dark, hidden in our bedrooms, desperate for answers. We can’t get proper treatment because they tie up limited national resources in endless, useless studies that conflate long-term fatigue with the very specific neuroimmune illness ME. They continue to harm and insult us, the way the LGBT and civil rights movements were harmed, denigrated and insulted in decades past. They are institutionally ableist in the way the Met was once labelled institutionally racist after the Stephen Lawrence inquiry. The only difference is that we die quietly, in the back rooms of our house, because of lack of proper care or effective treatment. No one sees, so the outrage is confined to those of us who know – those of us who already have this illness, and those who love and care for us.”
“Eventually, I think, the small cabal of people setting the negative medical and social narratives about ME will have to wake up and apologise for the harms they’ve caused to hundreds of thousands of people – just like psychiatrists recently apologised to LGBT people. History will not show them favourably, because I believe that justice will prevail in the end.”
Unrest has recently been shortlisted for an Oscar. The power of documentary film is that viewers are confronted by what is unseen – or ignored; it is a medium that conveys something words cannot. Maybe, finally, ME patients are beginning to be seen.
Read Simon Wessely’s response to Nathalie Wright