UK premiere of the award-winning M.E. documentary Unrest

UnrestOn Friday I watched the award-winning documentary Unrest at Sheffield Doc Fest.

The film includes clips from the video journal of director and US M.E. advocate Jennifer Brea since she became ill with M.E. in 2013, along with interviews with some of the other 17 million people worldwide with the illness, exploring their experiences with healthcare and the impact M.E. has had on their lives.

“Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and soon to be engaged to the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors and determined to live, she turns her camera on herself and her community, a hidden world of millions confined to their homes and bedrooms by ME, commonly called chronic fatigue syndrome” – Unrest website

Film programmeDoc Fest Programme

Unrest premiered in the US in a documentary competition at the 2017 Sundance Film Festival , where it won a Special Jury Prize for editing. At Sheffield Doc Fest, the film was only going to be shown once but due to selling out, another showing was arranged for Day 1 of the documentary film festival.

Update: Unrest has won two awards at Sheffield Doc Fest! The film won the Illuminate award, supported by Wellcome, to recognise vibrant storytelling and innovative filmmaking inspired by science, and the Alternate Realities VR Award. See the DocFest awards page for more info

Sarah and I chatting before the film
Chatting with Sarah before the film

It was also a great opportunity to meet up with one of my first M.E. friends on Twitter, Sarah a.k.a. @Cheggers1971. The trip was the first time I’d been on the train or even to an event with my scooter, so it was all a big adventure.

In the rest of this blog post I pick out just some of the issues covered in Unrest.

You know when you’ve been off work ill for a week or two and you get fed up of being ill? M.E.’s like that but you don’t get a little better each day; it just goes on and on. From that moment on you’re always ill to a varying extent. Not knowing what’s going on can last anything between weeks and decades (as in my own experience) before finding out what’s wrong with our body, and this all depends on the awareness of M.E. of the health professionals we come into contact with. This stage between being struck down with the illness and discovering what is wrong is when much of the physical and psychological damage occurs.

Jennifer initially came down with a fever which lasted ten days, and after this was so dizzy that she could not stand or leave the house. Over the following year the same pattern kept occurring: an infection followed by the same dizziness, returning to health in between. Then one day Jennifer was eating out at a restaurant and when it came to pay, she found that she couldn’t sign her name on the cheque. Her hand was frozen and she also suffered a migraine.

When Jennifer saw a neurologist about these neurological symptoms, he ran tests but because nothing could be found, he diagnosed her with conversion disorder, which is the conversion of psychological stress into physical symptoms (or somatisation) and said that he thought her symptoms were due to suppressed childhood trauma. Even though Jennifer told him she had not had any trauma, the doctor told her she had but doesn’t remember it. It’s easy to see that once someone has been labelled with this psychiatric diagnosis it is very difficult to disprove or to express that we disagree, as this is taken as denial and so nothing at all is believed or taken seriously.

Jennifer bedbound
Jennifer bedbound

Jennifer left the doctor’s office that day and as she’d been told there was nothing physically wrong with her she walked all the way home, which made her bedridden with severe M.E. With the right diagnosis of M.E. and the correct management advice, Jennifer would have known not to take this walk. Unfortunately, society programmes us to push through illness and many people with M.E. have been told to push themselves but acting on this harmful advice and incorrect early management of the illness has been shown to be a risk factor for severe M.E.

Turning to the internet, Jennifer found that there are people all over the world in the same situation: stuck at home, unable to work or study, and mostly bedbound with severe M.E. in darkened rooms due to light sensitivity. The film showed some clips of her video chats with people in the same situation around the world, including a teenager who won lots of medals for playing sports but had to give up because of his M.E. This is very similar to my own situation so it took me right back to when I was 15 and being told my “lead legs”, cluster headaches, recurring upper respiratory tract infections and breathing difficulties were due to bullying and being unfit, even though I was playing lots of sport. This was the start of me crying for the rest of the film but I wasn’t alone – there were audible sniffs in the audience throughout it.

The film discussed there having been several other illnesses that were initially dismissed as non-illnesses, psychosomatic, or hysteria, such as multiple sclerosis. Many campaigners believe that one of the reasons these conditions have not been taken seriously as real physical illnesses is because they are more prevalent in women than in men. Psychiatrists have seen them as “hysteria” (coming from the Greek for womb).

Health professionals should keep an open mind and adjust their opinions as science reveals more and more about the underlying pathophysiology of M.E. Recently research suggests that energy metabolism, muscle, autoimmunity, the gut microbiome and the autonomic nervous system are affected. The reason tests never show anything up is because the right things aren’t being looked at – not because we’re imagining things, or our symptoms are psychosomatic. Several potential blood tests have now been found and are being developed, and there have been differences shown in brain scans of people with M.E.

The documentary also showed Jennifer’s interviews of fellow suffers around the world and the difficulties they have had in getting the right advice and healthcare. Here are just a couple of the people with M.E. who were featured:

Karina Hansen
Karina Hansen

Karina Hansen is an M.E. patient who was forcibly removed from her family home in Denmark by armed police and detained in a psychiatric hospital against her will in 2013.

Her parents were accused of abuse and keeping her ill. The doctor involved was insistent that Karina’s ill health was being maintained by aberrant illness beliefs and thought patterns rather than the physical illness M.E. really is. The documentary interviews her mother talking about the ordeal and the three years her daughter was detained.

Whitney Dafoe, a travel photographer, was struck down with very severe M.E. in his 20s. His illness has been so severe that he could not eat, needed tube-feeding and he was wasting away. His father, Ronald W. Davis, PhD, happens to be a geneticist at Stanford University in the US and has founded the Open Medicine Foundation’s End M.E./CFS Project. Davies’ team have found that lipid metabolism is affected in M.E., and they are also developing a device to test for M.E./CFS, which has been featured in Nature.

Just like Karina’s parents, Whitney’s were also accused of abuse for keeping their son at home in a darkened room. Unfortunately, this also happens to some parents of children with M.E. in the UK, with social services getting involved and parents and Action for M.E. are currently analysing a survey of parents about their experiences.

The film team paid its respects to those with M.E. that have passed away by showing a list of their names on a black background. The three most common causes of death among patients with M.E. have been found to be heart failure, suicide, and cancer, and a UK study found that we are seven times more likely to die from suicide as the general population. Many of the people with M.E. I know sometimes feel suicidal, as the endless time being ill and feeling so isolated from the world as it carries on without us, can make us feel as if we no longer exist. Jennifer explained that it’s not really that she wanted to die, more that she couldn’t see an end to the misery.

M.E. can also cause problems with relationships with those around us, due to lack of understanding and a sort of compassion fatigue that seems to set in, but it really came across how Jennifer’s husband Omar was hugely supportive, patient and kind as her carer. As it’s Carers Week here in the UK, here’s the Carers section of the Action for M.E. website, with lots of advice and support.

#MillionMissing London 2017 demo
#MillionMissing London 2017 demo

Jennifer is also a co-founder of #MEAction, a global platform for M.E. campaigners, which went on to spearhead the #MillionsMissing movement also mentioned in the film. This is a patient-led global protest, mostly occuring in M.E. awareness month every May, in which hundreds of empty shoes are displayed in order to represent the 25% of patients with ME who are housebound or bedbound.

After the film there was a Q&A session with Jennifer, and we discovered that half the audience have M.E. or know someone with M.E. and the other half did not, so it was great that the film being shown at Doc Fest meant that awareness was raised outside of the M.E. community.

Someone in the audience mentioned that she made a documentary on M.E. in the 90s and was saddened to see that we still face the same prejudice and have the same difficulties accessing the right healthcare. Another audience member works in public health and rightly stated that the inequalities we’re affected by should be seen as a serious public health problem.

Jen and Emily chatting after the film
Chatting with Jennifer after the film

In the foyer we then had the opportunity to chat with Jen individually. I spoke to Jen about how emotional it had been to watch the film because it took me back through very painful memories.

I also talked with Jen about healthcare education, and particularly how M.E. isn’t covered in pharmacy education at all, and that I’ve worked with Action for M.E. to write a guide for pharmacists and have been raising awareness with pharmacy policymakers and pharmacy professionals about the illness.

Finding out what was wrong with me all that time since I was 15, through the events that took place over and over again in my life due to illness, such as being sacked from jobs, losing friends and partners and even my home, was absolutely mind-blowing and I’ve had real difficulty processing that. Watching Unrest, which covers all the various problems that come with living with M.E., meant that there was also an alternate film going on in my head, as it triggered memories of all the traumatic things that have happened to me throughout my 26 years of living with the illness. It gave me something to hang my story on, as it’s pretty much impossible to remember the memories chronologically, and seeing similar experiences to mine on the silver screen was therapeutic and a relief.

Enormous thanks to Jennifer, her husband Omar, and the rest of the award-winning team who produced this powerful documentary.

I would like to hear from any Schools of Pharmacy who would like to put on a showing of the film for students and pharmacists, so please contact me

Here’s a collection of tweets to @Unrestfilm from people who attended the film at Sheffield Doc Fest to finish with:

Comments are welcome. Check out my guidelines for comments and leave yours below.

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