One of the “biggest medical scandals of the 21st century” is about to be blown wide open to a new audience. This is because, for the first time, a major broadcasting channel – in Germany – will air the stories of people living with myalgic encephalomyelitis (ME/CFS) in a new groundbreaking feature-length programme. Investigative documentary Chronically Ill – Chronically Ignored is set to give voice to this too-long abandoned community, amidst the harrowing, and shameful history of patient neglect, abuse, and obtuse scientific obstinance.
It’s all thanks to the immense efforts of one bed-bound chronically ill director, and her committed co-director. Together, the pair embarked on a globe-trotting journey – online and in person – to confront politicians, scientists, doctors, and organisations at the heart of this major medical injustice.
Ahead of the broadcast, the Canary has spoken to one of the dedicated duo, long-term film-maker Sibylle Dahrendorf, who herself lives with a constellation of debilitating chronic illnesses.
Chronically Ill – Chronically Ignored: ME/CFS documentary to hit the TV airwaves
Chronically Ill – Chronically Ignored (Chronisch Krank – Chronisch Ignoriert in German) delves into the devastating illnesses that are ME/CFS and long Covid. The press briefing sums it up as follows:
Although myalgic encephalomyelitis, chronic fatigue syndrome (ME/CFS), has been recognized as a neurological disease for decades, it continues to be misunderstood by large sections of the medical profession. In addition, it is barely researched by the pharmaceutical industry and largely ignored by the healthcare system. With Long Covid and the consequences of the Covid vaccination, millions of people are now suffering from the disease. It is suspected that the coronavirus can cause the disease. The documentary examines the topic from the perspective of those affected and presents views from politics, medicine, science and the pharmaceutical industry. The film combines historical analysis with current assessments and personal testimonies.
Therefore, the pair have centred the documentary round the lived experience of chronically ill patients. And that’s where Dahrendorf comes in too:
One of them is the director Sibylle Dahrendorf, who has been suffering for years from a chain of multisystemic illnesses – including the consequences of drug damage caused by fluoroquinolones, which belong to the group of broad-spectrum antibiotics. Without treatment and confined to bed, Dahrendorf’s main means of communication with the outside world and scientists is social media.
Joining her in the ambitious undertaking was director Daniela Schmidt-Langels. Separately, Schmidt-Langels has explored the disgraceful situation for ME patients in a previous film on the topic:
Director Daniela Schmidt-Langels follows the traces of the joint research, conducts interviews with experts around the world and attempts to confront those responsible in politics and the healthcare system with the situation. “Chronically ill, chronically ignored” uncovers the serious ignorance in dealing with ME/CFS and other multisystemic diseases and is at the same time a powerful plea for a necessary rethink in politics, society and science.
A community with collective trauma
It was Dahrendorf’s personal experiences of the German healthcare system failing to support her with what she described as her own debilitating combination of “complex chronic illnesses” that led her to the scandal surrounding ME/CFS. She told the Canary that:
It was in the autumn of 2020 when I came home from a consultation from Dr Gilette in Spain, in Barcelona, to check my spine for the craniocervical instability (CCI). Another friend of mine I was in contact with from Germany who was part of the group Millions Missing Germany just convinced me to go on Twitter and Facebook and Instagram.
What greeted Dahrendorf was the warm, welcoming, and supportive online ME community. However, she stumbled upon something else that others connecting to the social media community invariably discover too:
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.
She expressed how she’d had high hopes that the coronavirus pandemic would be a watershed that finally ushered in a step-change in research and funding. Like so many others however, pitiful state responses had soon unceremoniously dashed that too:
I really had the desire or the wish when the pandemic started in 2020, that the healthcare system would change and would finally throw massive money into research and throw massive care programs for those affected. But I’m really more than disappointed that that never happened.
During her time among the online ME community, what struck her most was the shared weight of chronically ill patients’ abandonment:
So my most shocking experience was to be part of a community that is suffering so much, that I would call really a collective traumatic experience because we are so left behind.
Patients ‘can really die from those illnesses’
Dahrendorf gave the Canary an insight into some of the stories the pair have featured in the documentary. Of course, no film tracing the history of ME/CFS and the atrocious reality for patients up to the present day could overlook the tragic death of Maeve Boothby-O’Neill. It might arguably have been the first time the mainstream media reported so comprehensively on the story of a person who lived with the devastating disease.
The inquiry itself threw the failings of the state, the NHS, and ignorant-sometimes-bordering-arrogant medical professionals, into the spotlight. And thanks to Maeve’s own harrowingly poignant, powerful, and pertinent words, it drew attention to the prominent biopsychosocial lobby at the centre of her catastrophic care.
Maeve’s story struck a chord with Dahrendorf in many ways. Not least among these was the appalling fact that:
there’s no help in hospitals
Unsurprisingly, this was an all too familiar experience for Dahrendorf:
I mean, in Germany, it’s the same thing. I cannot go to a hospital to get help.
So, Dahrendorf and Schmidt-Langels knew they wanted to bring Maeve’s story to the fore to their TV audience in Germany. The pair reached out to Maeve’s mum Sara Boothby, and her dad, Times journalist Sean O’Neill. After some Zoom calls between them, Schmidt-Langels flew out to hear Maeve’s story in person. By centring Maeve’s catastrophic care from her parent’s perspective, the two hope to drive home something important about the disease. This is that: the same medical neglect, denial, and catalogue of errors for ME patients anywhere can be fatal:
It was pretty important not only to tell the story that those affected are suffering alone at home, but also to tell the story that those affected really can die from those illnesses.
Chronically Ill – Chronically Ignored: a documentary about death
One powerful statement from Dahrendorf captured the gravity of Maeve’s medical maltreatment. It did so in a context that’s only too painfully relevant for chronically ill and disabled people in the UK right now. When the Canary asked if there was anything important that she wanted to add, Dahrendorf turned to something that had hit her particularly hard during the making of the documentary:
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.
One part of the documentary will include an email and letter from a mother. Her daughter – who’d lived with ME/CFS – had taken her own life by assisted suicide. Dahrendorf shared the email with the Canary, which said that her daughter:
wanted nothing more than to live again, ended her life by suicide in April of this year because she could no longer bear the years of suffering. She could hardly eat or drink or lie down. The illness began in 2009 and has continued to worsen since 2017. She would have wanted to be part of this film to help other sufferers finally get help.
Sadly, she’s hardly alone in this though. In fact, she’s not even the only story of an ME patient taking the route of assisted suicide in Dahrendorf’s documentary.
In the credits of the movie, Dahrendorf battled to include memorial text for another ME patient who had taken her life by assisted suicide. Notably, she’s an ME patient who appears in the documentary who many in the online ME community knew and loved. A moving paragraph in Dahrendorf’s separate statement about the film reads:
Personally, I dedicate this movie in my heart to Judith, who passed away 4 months after finishing work on the documentary, by assisted suicide. Judith was one of the most positive and creative people I had the privilege of meeting under these terrible circumstances – via text and voice messages – and she is part of the documentary. Judith’s condition deteriorated dramatically until she had no more room to maneuver with what she called her “insidious combination of diseases” including ME, POTS, MCAS, pancreatic disease, cerebrospinal fluid loss and more. Judith, you are always in my heart, as are many others who have had to walk this path or have died from the diseases themselves, without palliative care.
Judith Schoßböck was an artist, activist, and scientist. She lived in Austria and died by assisted suicide on 10 December 2024. In May, her loved ones and community are holding a ‘MEmorial’ event in Vienna and online, to celebrate her life and legacy.
When it’s easier to get assistance to die, than assistance to survive
Dahrendorf told the Canary how Judy had been “a very close friend” and that they:
were always in contact via WhatsApp. She did really great art from her bed, great paintings.
During the production for the documentary, Judy had been too sick to have the camera crew in her room. Instead, Dahrendorf corresponded with her in messages, and Judy’s friend sent pictures for the film.
Dahrendorf explained how while Judy was sick before the vaccine, she could live, work from home, get groceries, and lead a somewhat “normal” life. However, that changed. Tragically though, Judy’s very severe ME/CFS and other chronic health conditions continued to get progressively worse. Dahrendorf detailed some of this:
Judy was damaged by the vaccine, by the way, by the Covid vaccine, and was sick before, but could live. I mean, she had some mast cell activation stuff before the vaccine. Then she took the vaccine and she went really, really fast downhill…
And then she had a lumbar puncture after her vaccination. And then she went further downhill, because, as a result of the lumbar puncture, she got a spinal leak. And she was full of mast cell activation. She really had heavy POTS as well. And so, in the end, she said that she really died from a combination of the illnesses. So, this for me is another important but brutal topic that we included in our documentary.
Healthcare systems all over the world are abandoning people living with ME and other chronic illnesses. Dahrendorf’s documentary will recount the reality that this appalling lack of care, and a curative, or even ameliorative treatment, is coercing patients to assisted suicide.
There’s a cautionary tale amidst the harrowing stories of the bereaved mother, and Judy too. Notably, Dahrendorf echoed something that the Canary has been warning about in Kim Leadbeater’s assisted dying bill. And it’s especially apt in light of the UK’s paucity in palliative and inequity in other vital healthcare for severely ill patients:
The topic of assisted suicide is devastating also, because it’s almost easier in Germany to get permission for assisted suicide than to get a doctor at home helping to survive.
Complex chronic illnesses – ME/CFS and its co-occurring conditions
Dahrendorf also emphasised the plural in many of her statements about her own experience, Maeve’s, and Judy’s. Throughout the Canary’s conversation with her via voice notes and WhatsApp messages, she used one notable recurring plural in particular: “illnesses”. And she explained that there was a reason for this:
The more I’m thinking about those affected or those I’m in contact with beyond the documentary as well, I often recognise, and in my case, it’s similar, that those affected never have one diagnosis. Mostly, they have two, three, five, four, six, seven, eight, I don’t know how many things.
She told the Canary that she regretted not being able to go into this in huge detail in the documentary. However, she’s mused the possibility of a follow-up, health and opportunity permitting. She had a working title in mind already: “Complex Chronic Illnesses”. Crucially, she’s keen to explore the experience of patients, clinicians, and researchers looking at ME more holistically amidst its panoply of common comorbidities.
And she has some experts on the list for it too. US doctor David Kaufman from the Center for Complex Diseases is one:
So, David Kaufman once said an important thing in their talks… He was talking about his long Covid patients now, and he said when the long Covid patients are coming new into his office, he always finds background noises before the illnesses.
So, let’s say he finds mast cell activation already. He finds some signs of leaky gut. He finds signs of connective tissue disorder and so on.
As a chronically ill patient living with multiple conditions, it’s something Dahrendorf can massively relate to as well:
I personally can identify more with those [in the] field of complex chronic illness, because I suffer from POTS, severe POTS. I suffer from small fiber neuropathy. I have the typical small fiber neuropathy symptoms. It has been proven by a neurosurgeon in Barcelona that I suffer from craniocervical instability. I have proven that I suffer from reactivated herpes viruses and reactivated Borrelia as well. So, I also have Lyme disease in my body. I have proven that I suffer from fluoroquinolone toxicity, and I can go on and on and on. And I am convinced that there are a lot of people out there who suffer from similar things and not only from one hit.
The idea of ME and other chronically ill patients suffering from “multiple hits” was something Dahrendorf firmly drove home from her personal perspective. A number of ME researchers – Dahrendorf highlighted Dr Amy Proal for instance – have postulated this concept. In short: it’s the idea that ME patients often have more than one factor triggering, and exacerbating their condition.
Chronically Ill – Chronically Ignored: fluoroquinolone associated disability and ME/CFS
Notably, different toxins, chemicals, heavy metals, mold, and other substances can all harm and put significant strain on people living with ME/CFS.
In the documentary, Dahrendorf and the production team delved into one lesser talked about factor: antibiotics.
Dahrendorf herself lives with fluoroquinolone damage – or fluoroquinolone associated disability (FQAD). They’re a group of antibiotics that doctors prescribe to treat various bacterial infections. Crucially though, there have been numerous patient reports of harm from these – as Dahrendorf can obviously attest to herself. In a personal statement preluding the documentary’s release, she described how among the multitude of chronic illnesses she lives with, she has:
mitochondrial damage, nerve damage, partly triggered by toxic antibiotics such as fluoroquinolones and metronidzoles.
Before the documentary was even a vision on the horizon, Dahrendorf had been shocked to find many people affected by fluoroquinolones in Germany. Significantly, many were ME patients with a history of taking these antibiotics:
At some point that made me really suspicious. And then we decided to put that topic also in the film because there’s an overlap. It’s an overlap in the diagnosis because the doctors are not able to do really clear analysis of the patients, because if they would ask the patient what kind of antibiotics did you take in the past and the patient would say okay, I took fluoroquinolones, then you have a fluoroquinolone damage – also called fluoroquinolone associated disability.
Moreover, she noted the interesting intersections between ME and FQAD. For instance, there’s increasing evidence that mitochondrial dysfunction is likely playing a role in ME, and its varying level of severity for patients. In FQAD, the antibiotic has damaged the patient’s mitochondria. And this was only the beginning. Dahrendorf stressed a significant suite of other similarities:
They’re damaging mitochondria. They’re damaging connective tissue. They’re damaging the small fiber nerves so you can get a small fiber neuropathy. A lot of ME patients have that and a lot of long Covid patients have that. The fluoroquinolones are really huge mast cell drivers so you have another overlap to ME.
However, she was cautious not to conflate ME and FQAD:
I’m not sure if you say, okay fluoroquinolone toxicity is the same as ME or ME/CFS. I don’t want to claim that. But what I do know is that we have here in Germany and in the US as well – I’m in contact with so many sufferers in the US of fluoroquinolone toxicity – that there’s a huge overlap.
Of course, the science isn’t currently there to make a consensus on it. While she couldn’t definitively prove that they’re connected, she felt more acknowledgement and research of the two is important. Moreover, for her:
fluoroquinolone is one of the biggest drug scandals that we have in our so-called modern society. And almost everybody knows that, but nobody really is being active and saying, okay, we have to throw those fluoroquinolone from the market because the people are really sick after taking them.
Damaging patients with antibiotics – a crime and scandal in itself
One of the biggest drug scandals meets one of the biggest medical scandals of the 21st century? Dahrendorf has found there are certainly parallels with the way healthcare systems and states more broadly treat FQAD patients too.
The documentary draws attention to FQAD patient Sven. And Dahrendorf said that for Sven:
he really says for him, it’s poison. It’s really the doctor’s giving you poison. The doctor’s not giving you anything to heal, he gives you poison.
Dahrendorf explained how at the time of the film’s shooting Sven was a permanently disabled wheelchair-user from the effects of the fluoroquinolones on his body. Since then, his health has only deteriorated further. Dahrendorf has kept in touch with Sven, and told the Canary that he can no longer sit in a wheelchair and that:
He cannot do anything anymore. He’s lying 24-7 in bed in so much pain. He cannot hold his mobile phone anymore. He was damaged in 2016 if I remember that right, and it was clearly a case of fluoroquinolone toxicity because he took the fluoroquinolones and he got side effects almost immediately. Then the doctor changed the fluoroquinolone from one fluoroquinolone into another fluoroquinolone, and he went downhill. So he never got better and he is now in bed and cannot hold his mobile phone anymore.
Of course, Sven’s experience is one that raises the alarm for Dahrendorf over doctors prescribing ME/CFS patients these antibiotics. It’s not only that there are overlaps, it’s the potential that these antibiotics can make ME patients inordinately worse as well:
What I really find shocking as well is that those ME patients that say that typically went through an infection, whatever, if it’s Epstein-Barr, or swine flu, or I don’t know, Covid, or something else, they get [given] the fluoroquinolones. And this really makes me angry, because the fluoroquinolones can really throw you over the edge. And if you are really sick, let’s say with ME caused by an infection, and your doctor will give you a fluoroquinolone on the top, really this is double hell.
In 2019, the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) issued a warning over the drugs. Similarly, the US Food and Drug Administration recognises the group of antibiotics can have significant, debilitating, and long-term adverse effects. A 2024 ME study in the journal Frontiers connected the dots, suggesting that:
fluoroquinolones have been found to increase tendinopathy involving oxidative stress and mitochondrial toxicity (176–180). Hence, the use of such drugs may have a multisystem effect and lead to the development of chronic illnesses such as ME/CFS.
The documentary speaks to one of the researchers responsible for the paper. This is respiratory consultant and scientist at the University of Manchester, Dr Asad Khan.
Ultimately, Dahrendorf told the Canary that for her:
it was shocking living in a world where not only infections can kill you, more or less, or other things, but medications as well. Because if I’m going to a doctor and I say, okay, I’m sick, I have an infection, XYZ, and he gives me those fluoroquinolones without the awareness that those drugs can cause heavy, irreversible damage to the body, that’s for me, a crime. That’s really a crime.
The first step is bare minimum recognition of comorbidities
Given that many people living with ME/CFS also experience different combinations of co-occurring complex chronic health conditions, Dahrendorf feels there isn’t a one size fits all approach to treatment either:
I do not think that we all suffer from the same thing and that there must be one biomarker and then one medication and then everything will go fine.
Similarly, the Canary’s Steve Topple has highlighted how it’s this very lack of attention to these common comorbidities that’s likely contributing to patients developing severe ME in the first place, and leaving them so dangerously, life-threateningly ill. He wrote how a lack of clinical guidelines and joined up care in 26-year-old Carla Naoum’s case for her POTS, MCAS, and likely gastroparesis, is doing just that.
After speaking to countless ME patients the world over, Dahrendorf could clearly see there were many living with varying debilitating combinations of chronic illnesses.
She therefore felt that this is something which needs more consideration in care for chronically ill patients. And, in her view:
first, of course, there must be awareness and recognition by the government, this is the first step.
Empty words deserve the empty chairing treatment
Unfortunately, it was precisely this that Dahrendorf and Schmidt-Langels found in short supply.
German healthcare minister Karl Lauterbach has previously spoken out about ME/CFS and long Covid. In 2024, he keynoted the patient-led Unite To Fight conference. However, for the documentary, it was tumbleweed from Lauterbach:
We got several negative answers and his press office wrote us an email, several emails that he, our healthcare minister [had] said everything about that topic, so there’s nothing more to tell.
Dahrendorf and Schmidt-Langels also contacted the German College of General Practitioners and Family Physicians (DEGAM). It’s the German body that oversees production of the country’s clinical guidelines. However, Dahrendorf told the Canary that in Germany “there are really no proper guidelines” for ME.
Notably, she pointed to the fact that DEGAM lists ME/CFS under its guidelines on ‘Tiredness’. In short: German guidelines wrongly categorise ME as a fatigue condition. Dahrendorf noted that it’s also only one measly chapter in the guideline to boot. So, she expressed to the Canary how this is “a huge scandal in Germany”.
Predictably however, when Dahrendorf and Schmidt-Langels pressed for answers on this, DEGAM’s president, professor Martin Scherer, didn’t want to know:
We got an answer back that he won’t give us an interview in front of the camera and that he doesn’t agree to answer vexatious questions, because we had, of course, tough questions for him.
There were others who’d refused to respond. This included the World Health Organisation (WHO), the Austrian health minister, and multiple pharmaceutical companies the two had contacted. So, minus interviews, Dahrendorf and Schmidt-Langels did the next best thing: they empty-chaired them. Ultimately, this simply underscored more than ever the way states and international health bodies dismiss and ignore chronically ill patients:
We decided at some point that would be the part of the film, to emphasise that the [people] responsible in Germany, they’re not able to give us interviews or they don’t want to give us interviews, because this is also a message. If politicians responsible for that disaster, decade-long disaster, are not able to give interviews for such a huge project, because it’s a 90-minute documentary and ARTE television is a really famous broadcasting station here. So we decided to really tell the story that they don’t or didn’t give us the interview that we tried to get from them. I mean, this is as well a statement.
Chronically Ill – Chronically Ignored: when the credits roll, the ‘tragedy doesn’t end’
Nevertheless, the pair hope that the documentary will make a difference.
Speaking to Dahrendorf as a person living with ME/CFS – from a majority chronically ill and disabled team of journalists – I’m grateful to her and her colleagues for bringing these crucial conversations to a broadcast audience.
Whether it will make governments finally get their act together for ME and other chronically ill patient communities, remains to be seen. And in fact, Dahrendorf signed off her personal statement on the film with the haunting words:
Unfortunately, when the movie ends, the tragedy doesn’t end.
Of course, she’s indisputably right about that. The situation for ME patients – everywhere – still feels like we’re barely even at the starting line.
However, from all that she told the Canary, one thing is clear. Chronically Ill – Chronically Ignored will help patients feel seen and heard in a way like never before. And that alone is surely an achievement worth celebrating. Ultimately, that’s no small thing for a chronically ill community for too long unconscionably, ‘chronically’ ignored.
Arte TV will broadcast Chronically Ill – Chronically Ignored on 25 February 2025 at 10.35pm CET. Dahrendorf has not been able to confirm with the broadcaster, but hopes Arte TV will add the documentary to its Youtube channel, with English subtitles in due course.
Featured image supplied
