A groundbreaking feature-length programme exploring the shameful history of medical neglect for myalgic encephalomyelitis (ME/CFS) patients is now available to global audiences online.
German investigative documentary Chronically Ill – Chronically Ignored gives voice to this too-long abandoned community, centring the experiences of people living with the devastating disease.
German broadcast channel Arte TV originally aired the film in February to audiences in Germany. Now, the documentary is gearing up to take viewers from around the globe on a journey to confront the politicians, scientists, doctors, and organisations at the heart of this major medical injustice.
The documentary has gone live to rent on Vimeo. The film is in German, but international viewers can select various subtitle options to follow it in their preferred language. However, if you want to watch it, you will need to be quick. The site is currently planning to host the programme from 9 June to 20 June.
Chronically Ill – Chronically Ignored: ME/CFS documentary now available online
Chronically Ill – Chronically Ignored (Chronisch Krank – Chronisch Ignoriert in German) delves into the devastating realities of ME/CFS and long Covid. As the documentary blurb notes:
The medical term myalgic encephalomyelitis/chronic fatigue syndrome – in short ME/CFS – refers to a multi-systemic disease with devastating effects: It usually occurs as a result of infectious diseases, but other causes can also trigger this serious illness.
Although ME/CFS was classified as a neurological disease by the World Health Organisation (WHO) as early as 1969 (then referred to as ME), it remains misunderstood in politics, the medical profession and society to this day: Those affected are stigmatised and psychologised, and there is no medication, treatment or therapy. The situation has worsened dramatically with the COVID-19 pandemic. Before the pandemic, the number of people suffering from ME/CFS was estimated to be at least 17 million worldwide; with Long COVID and the post effects of the COVID vaccination, millions more are affected – the WHO estimates 36 million Long COVID sufferers in Europe alone. Will this finally trigger an overdue rethinking?
The feature-length film is the brainchild of chronically ill and bed-bound director, Sibylle Dahrendorf, and fellow director Daniela Schmidt-Langels. Dahrendorf lives with a constellation of debilitating chronic illnesses – including an under-recognised antibiotic induced condition known as fluoroquinolone associated disability (FQAD). Meanwhile, co-director Schmidt-Langels has explored the disgraceful situation for ME patients in a previous film on the topic.
A global story for a global audience
Informed by her own lived experience of multisystemic chronic illness and medical neglect, Dahrendorf previously told the Canary how it was discovering the global nature of this ongoing scandal that had been the impetus for producing the documentary. She explained that:
I was so shocked that so many people worldwide are living really similar nightmares. For me, it was shocking that they’re all left alone by the healthcare system.
Now, the film will put the lives of ME patients front and centre to an international audience. And what’s notable is that the documentary itself is a window into the world of ME from patients across the globe.
In Austria, the documentary speaks to Judith Schoßböck – an artist, activist, and scientist who lived with severe ME/CFS – months before she took her life by assisted suicide.
It also introduces viewers to the parents of 27-year-old severe ME patient Maeve Boothby-O’Neill in the UK. They detail her tragic death after a series of catastrophic failures under NHS care.
Overall, the documentary doesn’t shy away from the harrowing reality for patients all over the world. This is because, as Dahrendorf previously told the Canary:
This is a documentary, as well, about death. How you can die from those illnesses, like Maeve unfortunately, did. This is an illness about the torture of those illnesses, that people are forced to go the route [of] assisted suicide as well.
Therefore, as the film blurb states, it sets out to convey:
the almost incomprehensible situation of seriously ill people who vegetate in years of darkness behind drawn curtains, completely shielded from the outside world, because strong sensory impressions and any exertion have become unbearable for them: “The body disintegrates into a thousand pieces,” says Dahrendorf; 21-year-old Mila describes her life since the illness as an “endless journey through a long, dark tunnel”.
A daring exposé and passionate plea for an urgent course change
Ultimately, Chronically Ill pulls no punches. It lays these problems squarely at the feet of those responsible for these persisting care and research failures.
The 92-minute exposé takes on the “biggest medical scandals of the 21st century” from all angles. It delves right into the shameful history of patient neglect, abuse, and obtuse scientific obstinance. From grilling politicians and health bodies, to empty-chairing the ones failing to show up in the documentary, Dahrendorf and Schmidt-Langels hold all manner of the people and organisations responsible for this appalling situation, to account.
Alongside this, the film begins to explore the under-researched plurality of chronic illness. Specifically, it seeks to unpack the co-occurring nature of underacknowledged chronic health conditions.
Overall, as the documentary description notes:
To this day, those affected are still fighting for recognition, research and therapies. In addition to all the justified anger about the ignorance in dealing with ME/CFS and other overlapping multisystemic clinical pictures that CHRONICALLY IGNORED reveals, the film is above all a passionate plea that calls for a rethinking in politics, society, the pharmaceutical industry and science.
Arguably, the documentary is vital viewing for politicians, clinicians, and all those who’ve neglected chronically ill patient communities for decades. But most of all, now ME and chronically ill patients the world over can watch this documentary – and finally feel a bit more seen.
The documentary is available here to rent on Vimeo until 20 June.
Feature image via the Canary
This post was originally published on Canary.