Unrest is a film about ME, made by Jennifer Brea (right) and which tells the story of her life with the condition since it forced her to cut short her degree. It also tells the story of the outbreak of the disease in Nevada in the early 1980s, which led the US Centers for Disease Control (CDC) to label it hysteria and obstruct biomedical research into it for many years, featuring interviews with American scientists who have treated sufferers, including Nancy Klimas and Paul Cheney, both heavily featured in Hillary Johnson’s book Osler’s Web. It also features interviews with other sufferers such as Jessica Taylor here in the UK, as well as the parents of Karina Hansen, the Danish woman forcibly admitted to a psychiatric unit in 2013 and only released earlier this year. This was partly a KickStarter funded project and I donated some money early on when it was working under the title Canary in the Coal Mine, which meant I got access to a free stream of the film as of last week.
There have been a few film projects launched to cover the story of ME both here and in the USA; trailers for a project called What About ME? have been seen on YouTube over the years, but to my knowledge that never came to fruition. One that did was Voices From the Shadows, shot on a low budget by people with relatives with ME and released in 2011 which won the Audience Favourite award at the Mill Valley film festival that year. I wrote a review of that here and I also attended a screening at which Dr Nigel Speight, a British paediatrician who treats adults and children with ME, answered audience questions. You can watch that film for free at present on Vimeo using a link from the project’s website. I thought that film was harder-hitting than Unrest because there are no happy endings (two of the five people with ME featured had already died) and it principally features very severely affected people.
This film is mostly centred around telling the story of how its author and her husband coped with the disease and tried to mitigate its effects. There is a lot of footage of Brea in pain and her husband trying to make her comfortable, for example. It also shines a light on the appeal of quackery to many people with ME: the issue of “toxic mould” in houses comes up on ME forums time and again, and Brea tried to escape from it by moving to a desert location and living in a tent out of the house. On one occasion Brea tells her husband not to touch or get too close to the tent as he has been in the house, which is full of the alleged toxic mould, in the clothes he is wearing, which causes him some degree of annoyance and frustration. She also interviews a mother with ME whose daughter also has it, and talks about the possibility of her having a child (which would be difficult in itself but also raises the possibility of the child having it), and the other mother positively encourages her to do it. Perhaps inevitably as it’s an American film, it comes back to their relationship again and again.
This film doesn’t tread the same ground as Voices from the Shadows; it doesn’t principally feature the very severely affected, although it does feature interviews with the parents of Whitney Dafoe who is currently bedridden and very severely ill, as well as footage of and interviews with Jessica Taylor who runs the Facebook page The World of One Room and whose progress people have been able to follow on social media for some years; her book A Girl Behind Dark Glasses is due for release next year. That said, more people are affected to Brea’s level of severity than are affected in the way Emily Collingridge or Lynn Gilderdale were. It also really doesn’t look into the science, the debates about what sort of virus is the cause of ME, for example, nor the excitement and disappointment over XMRV which was ruled out as a cause of ME around the time this project started. But it’s a useful and fairly realistic look at what it’s like to have ME and the effect it has on your life, your relationships and your family, even if you’re not bedridden for 15 years. (Update: Clare Norton, whose daughter Merryn Crofts was very severely affected and died earlier this year, has written a review for Greg Crowhurst’s site that makes this point.)
Sadly, some of the viewer reviews of this film have been malicious; there is a group of activists who will automatically become hostile whenever the phrase “Chronic Fatigue Syndrome” (CFS) is mentioned, or ME is paired with CFS as if they were the same thing; the second term has wider definitions and a history of being used to trivialise ME, but it’s also commonly used (along with “Chronic Fatigue and Immune Dysfunction Syndrome” or CFIDS) to refer to ME proper. These people are known for posting “ME is not CFS” again and again in ME forums or pages, often sounding like a stuck record as they say this over and again without any attempt at reason. (I call this phenomenon “stuck record syndrome” and have had to warn moderators about it a couple of times.) There have been a few one-star reviews posted on Amazon calling this a “CFS film” and repeating the “not CFS” mantra which will drag down the average rating. I would give this four out of five because it’s a four-year effort by someone who was very ill and had to work from bed, and sheds a much-needed light on the plight of people with ME in both the US and Europe and the disbelief and abuse they still suffer.
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