Time for Unrest: Why patients with ME are demanding justice

Nathalie Wright

“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.

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During 1955 in London, there was a cluster outbreak of a mysterious disease among staff at the Royal Free Hospital in Hampstead. An estimated 292 people were affected, the majority were female nurses. Pathology investigations revealed inflammation of the brain and spinal cord, but the cause remains unknown. It is labelled “myalgic encephalomyelitis”, ME for short to reflect the severe muscular pains of patients and evidence of damage to the nervous system. In 1970 two psychiatrists, Colin McEvedy and AW Beard, published a paper that was to have a profound influence on the history of ME. The authors declared the illness to be “mass hysteria”, citing as evidence the fact that many who fell ill were young women. Neither of them had seen a patient.

Jessica Taylor, bedridden with severe ME since she was 15, has her makeup done by her sister (Shella Films)

Compounding this dismissal meant another blow to patients: the coining of a new name. In the US, the term chronic fatigue syndrome or CFS was introduced in 1988, which was later adopted in the UK. Not only did the new name trivialise the disease, it was also too vague to distinguish ME from other fatiguing illnesses, meaning different illnesses causing fatigue were unhelpfully lumped together.

For patients, communicating the seriousness of their illness is often impossible. “I had this experience of trying to describe my symptoms in words to my doctors for 18 months as I was getting worse,” explains Brea. “I would talk about a burning in my brain or my spine or the fact that I would lose the ability to speak or sometimes I would collapse on the floor and I couldn’t lift my head.” When she later requested her medical records almost all of these serious symptoms were translated into “headache pain”.

Psychosomatic explanations of the disease were being further developed by a small, but influential, group of psychiatrists in the UK. They developed a theory of ME based on the biopsychosocial model of illness, a framework for illness that has also been adopted by the Department for Work and Pensions (DWP), first fully embraced by New Labour. The biopsychosocial model states that illnesses are part biological, part mental, part social. This idea seems common sense, but in practice it is often the psychological elements that are emphasised. Thus, the “biopsychosocial” model of ME is that a patient may have originally had a virus but after that, symptoms are not primarily the result of an ongoing disease process at all. Instead, patients simply have “dysfunctional” or “false” illness beliefs and thus adopt the “sick role”. Spending too much time in bed is the reason they have physical abnormalities, as they become deconditioned due to “exercise avoidance”, and it is assumed that symptoms are reversible by the patient’s own efforts.

However, there is growing evidence that such an approach towards ME is not only inaccurate, but dangerous. Keith Geraghty, honorary research fellow at the University of Manchester and an expert in ME/CFS explains: “Many medical professionals do not view ME/CFS as a serious medical condition. Psychiatrists in the UK have done great harm to ME/CFS patients by promoting a largely psychological model of the illness that diverted research funding away from investigating the many biological abnormalities in the disease and this model has downplayed the severity of the illness.’

The two treatments that arose from this psychiatric model are cognitive behavioural therapy (CBT) and graded exercise. Currently, they are the only two treatments offered by the NHS for ME. Some psychiatrists take the extreme view that patients – including children – need to be admitted to a psychiatric ward, even if against their will and that of their parents. Unrest features a young, severely ill Danish woman, Karina Hansen, who was forcibly taken from her home by five policemen and admitted to a psychiatric ward. Her family were not told where she was being taken. She wasn’t allowed to be seen by any doctors other than psychiatrists. Three years after being taken, she was finally allowed home; she remains ill with ME. In the UK, child-protection powers are sometimes used to enforce psychiatric treatments for children with ME and hundreds of families have faced investigation for child abuse or neglect, though there are no official figures kept by UK health authorities. One charity, Tymes Trust, has advised around 200 families. None of these families were subsequently found to be at fault.

Robert was 12 when he first started graded exercise therapy. His mother, Lorraine, contacted The Independent to explain how the NHS physiotherapy he was asked to do drastically damaged his health. “Robert was moderately ill when the physio began but became severely ill and required a wheelchair after a few months. He was given exercises to do in a hydrotherapy pool, some involving swimming. After just a few months, he lost the ability to walk. His legs turned to jelly, he had severe pain, particularly behind his knees and he just couldn’t support his weight.

“The physiotherapist wouldn’t accept they were causing the harm and blamed my son for not trying hard enough, saying he didn’t want to get better; they would not accept that there was anything physically wrong with him.

“He had a fit in the pool where they were doing the exercises, which the neurologist later said was caused by extreme pain. Eventually, we had to get a charity to intervene so that we could stop the graded exercise. My son is now 21 and is still severely ill and housebound.”

Robert’s story is one of many, although the NHS does not keep a record of harms caused by graded exercise for ME.

The biopsychosocial model, and the assumption that if people who become disabled from conditions like ME adopted the correct attitudes and behaviours they could recover, seems to appeal to politicians looking to cut the costs of disability payments. “Benefits can often make [ME] patients worse” claimed psychiatrist Simon Wessely, one of the originators of the biopsychosocial model of ME, in 1993 in a meeting with a minister for the disabled. If giving disability benefits to patients, such as those with ME, may foster a culture of dependency, then cutting these benefits can be presented as a positive intervention. According to a document promoting the biopsychosocial framework circulated by Lord Freud, the former minister for welfare reform, it is important for those with health problems like ME to “recognise that the sick role is temporary, in the expectation of recovery” and that giving disability benefits to such patients, may foster a culture of dependency.

However, serious problems with the research claiming to show that biopsychosocial approaches to ME can lead to patients recovering have now been identified. In 2011, controversies about these treatments came to a head when the results from a medical trial – known as the PACE trial – were published. The trial cost £5m and was part-funded by the Department of Work and Pensions; it tested graded exercise and cognitive therapy for ME. The researchers claimed it had been a success and that the treatments were “moderately effective”. However, the trial has faced severe criticism, especially outside the UK, with 100 experts signing an open letter asking for the retraction of one of the trial’s key papers. Among the criticisms was the fact that the trial’s definition of recovery was so weak that even if patients reported their health deteriorating on the trial’s two primary outcomes, they could still be deemed “recovered”. Objective measures of patients’ health failed to show a clinically useful improvement, but were often downplayed.

Whitney Dafoe is sensitive to sound and can no longer speak (Shella Films)

After a lengthy legal battle fought by patients, the trial scientists were required to release the raw data from the trial. Reanalysis showed no statistical difference between the different treatments offered: a null result. It also showed that previously reported recovery rates had been inflated fourfold. The trial authors maintain that the trial proves CBT and graded exercise are modestly effective.

As critics are increasingly pointing out, the problems with PACE went beyond bad science. A 2006 report by the parliamentary Group on Scientific Research into Myalgic Encephalomyelitis had already pointed out that there is a “vested interest private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness”. The report also mentioned cases where advisers to the DWP had also had consultancy roles in such companies. These links were investigated further by the Centre for Welfare Reform who stated in 2016 that: “Emphasising the importance of psychosocial factors and classing ME as a mental health problem could bring immediate financial benefits to insurance companies when policies limit payouts for mental health problems.”

Unum is the top disability insurer in both the US and UK, and a company which the Centre for Welfare Reform claims is lobbying the Government to promote private health insurance. An internal Unum report on “CFS” claimed the company could “lose millions if we do not move quickly to address this increasing problem.” It was argued that CFS claims should be managed “more aggressively and in a proactive rather than a reactive fashion” while attempting to present ME as “neurosis with a new banner”. Four of the PACE trial scientists disclosed conflicts of interest with the insurance industry.

Even as the international scientific community expressed concerns about the trial, the British media continued to promote it as a great success. When questionnaire results from PACE participants two years after they had received treatment were released, which showed that those who had received CBT and graded exercise reported being no better than those who did not, this was greeted with a front-page story on The Telegraph declaring that “Exercise and positivity can overcome ME”. The Countess of Mar has drawn attention to the Science Media Centre’s promotion of the trial, which led to such headlines, and the fact that Simon Wessely is a board member.

Throughout it all, patients were depicted as dangerous militants in the media for criticising the trial, even though they turned out to be vindicated. The tribunal which ordered the release of the trial’s data ruled that “assessment of activist behaviour was, in our view, grossly exaggerated”. The most severely ill (about a quarter of patients are bed or housebound) continued to receive no care at all, with 80 per cent of requests for home visits turned down by the NHS. Added to this, a dearth of social care and difficulty getting benefits meant many patients were left completely desperate and often without any support at all, with even family members often disbelieving their illness. The waste of human potential caused by ME was recently reckoned to cost the UK economy £3.3bn a year in a report by The Optimum Health Clinic Foundation.

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Across the pond in the US, science is moving on. In 2013 the US government asked the Institute of Medicine to convene an expert committee to examine the evidence base for ME. Two years later, their report Redefining an Illness was published. The report stated ME is “an acquired, chronic multi-systemic disease biological in nature” symptoms of which include “immune, neurological and cognitive impairment”. After reviewing thousands of medical papers, the report “stresses that this is a medical – not a psychiatric or psychological – illness”.

After the report found considerable evidence that “exertion of any sort can adversely affect several organ systems and many aspects of patients’ lives, often seriously and for long periods” and the controversy of the PACE trial, US health agencies removed their recommendations for CBT and graded exercise.

Over the past few years, studies have demonstrated that ME patients have metabolic, immune, neurological and other systemic dysfunction. Metabolites and proteins in the blood have been found to be abnormal, showing that the bodies of patients are in a hypometabolic state, causing the body to shut down and their cells become unable to produce energy. Neurological and systemic inflammation (along with a female bias) could point towards ME being an autoimmune disease. Evidence of immunodeficiency has been around since 1990 and more recently numerous studies have shown impaired natural killer cell function; a cell which helps control viral infections. ME science, however, is still in its infancy. More studies are needed to identify a cause and develop treatments.

Professor Ron Davis, one of the most eminent ME scientists in the US, used to work on the human genome. Now he has gathered a group of scientists, including three Nobel laureates, to work on “one of the most urgent areas in medicine today”. He is also the father of Whitney Dafoe, the severely ill young man featured in Unrest.

A ‘Millions Missing’ protest in 2016. The protest happened in different cities around the world simultaneously

“This is a much more serious disease than many of the other things that people are worried about. It’s more common than MS, it’s more common than Parkinson’s disease, it’s more common than Aids. This is probably the last major disease that we know so little about. And it’s because of its nature that it’s been hidden. The severe patients are often just in their home being looked after by someone and no one knows they exist. But it can get very severe, people have tried to make some measures in terms of debilitating illness, it’s generally viewed as worse than many other diseases that have been ranked in terms of quality of life.’’

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.

Unrest is being screened in selected cinemas around the UK and is available to watch online