Independent: Time for Unrest: Why patients with ME are demanding justice | 07 January 2018

By Nathalie Wright, Independent, 07 January 2018.

ME Association comment: This is an excellent, ‘long-read' article published by the Independent and it can be read in full here. Rather than reproduce the complete text, which also details the controversial history of ME/CFS, we have chosen to focus on the latter half of the article.

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.

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.

“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.