Life with ME on the Dutch benefits hamster wheel

This system is not failing. It is carefully designed to strip you of your dignity

Two years ago, my Dutch father-in-law dropped a casual reference to the British award-winning film I, Daniel Blake after hearing about our latest round with the Dutch government over sick pay benefits. “It sounds a lot like that British film where he gets trapped in the system,” he said.

I thought about this when me and my wife, who suffers from a condition called ME, were planning our next move in a two-year battle with the UWV, the government body charged with assessing and administering sick pay benefits in the Netherlands. I, Daniel Blake follows a man who is unable to work due to a medical condition and is forced to navigate an absurd and punishing benefits system. He fumbles around in a bureaucratic labyrinth that strips claimants of their humanity and reduces them to numbers. And we seem to be in the same boat.

In January I finally lost the plot and posted a thread about our case on Twitter. My wife is a former reality TV contestant in the Netherlands. That detail is not important. I used it to show the government who she was: a vibrant, healthy mother of two who led an active life before this condition took her off the grid. I wanted to paint a picture of her that only I know and show that she isn’t just a number. Watch her in the video below (from 19mins 20) as she wins the beam challenge in the final episode of the Dutch version of Survivor, Expeditie Robinson, on her way to coming third behind two Belgian blokes.

Struggling for Recognition

ME has removed that active life. When I first met her she was working in the Van Gogh Museum in Amsterdam. She lived in her own apartment in the South and biked everywhere in the city. A few short years ago she could still pick up our two kids from school. Now she struggles to get out of bed. She can’t play or look after them anymore, she can’t stand noise, gets regular headaches, and is exhausted after minor activities like getting dressed. Over the four years since this became her life, she has slowly retreated from public view. Few people actually see her. Some of my friends have never even met her.

I knew nothing about ME four years ago. Only that it defies easy explanations. We know a lot about diseases like diabetes, cancer and cardiovascular disease because research and funding has yielded great advancements in their diagnosis and treatments.

With ME, however, progress is slow. It is a multi-system disorder with no single cause and no effective treatments. Yet. But there has been progress. Research over the past 35 years has discovered the underlying abnormalities involving multiple organ systems in patients with ME, compared with healthy people. But most of these abnormalities are not detected by standard laboratory tests. How do I know this? Because it is my job as carer to explain this to people when they ask about my wife.

Around 17 million people in the world live with ME, and between 30,000–40,000 of them are in the Netherlands. That isn’t an insignificant number. And yet the condition is still widely misunderstood and misdiagnosed. My ‘go to’ is the beautiful Netflix documentary, Unrest, which gives me something to share with people when I get stuck in the quagmire of numbers and medical jargon. It charts a woman’s struggle for recognition and the years spent fighting for the condition to be taken seriously.

This is a problem with what some call a ‘contested’ medical condition: it invites interpretation, conjecture and theory. Even though ME has been recognized by the WHO as a neurological disorder since 1969, some insurance doctors don’t believe the condition exists. And these are the people who determine your financial future. After our experience my wife doesn’t feel her condition is taken seriously by the medical profession and those sent by the Dutch government to assess her.

The Perils of Ignorance

Since I posted our story a lot of ME patients have sent me their own experiences about struggling through a diagnostic wilderness. Not just here in the Netherlands, but everywhere. And we appear to be relative novices by comparison. Some people have lived with this condition for 30, 40, 50 years or more.

A teenage girl who missed out on school, a ballet dancer whose career was cut short, a mum and daughter who suffer together. The stories go on and on, and so do the challenges.

And a picture emerges of institutional indifference to ME as a legitimate disease. I initially thought that our experience was unusual. But actually, it wasn’t. It was just the way things rolled. As I’ve reached out for help and advice it’s clear there is a breakdown of trust between government assessment bodies and ME patient groups in the Netherlands. Patient groups told me they face a system which is fairly comfortable ignoring medical advice on ME, even challenging patient experiences of the disease.

For example, a hallmark symptom of ME is something called post exertional malaise (PEM), where ME symptoms worsen after physical or mental activity. Doctors without knowledge of ME struggle with this but still choose to ignore ME specialist’s advice. PEM can be measured by a widely used two-day cardio-pulmonary exercise test, where they monitor the heart and breathing. But it remains a lottery whether your insurance doctor chooses to accept this test as proof. I’ve spoken to many ME patients whose UWV insurance doctors, without explanation, ignored their test results.

We never knew what an insurance doctor believed or didn’t know [about ME]. If the UWV wouldn’t accept tests that proved my wife’s condition, do they believe ME is real? If not, should we be made aware of this before we meet with them? Or, is it our job as patients (and support groups) to educate them? It shouldn’t be. I gaze through the UWV website to understand their position or perspective on long-term chronic conditions before our next meeting and I stumbled on a blog post by an insurance doctor:

“The influence of activity on disease has long been underestimated,” it says. “For example, people undergoing chemotherapy and exercising, recover much faster. Staying active is the motto. You don’t usually get any better from sitting at home.” This may be true of some diseases, but it’s the opposite with ME.

The Librarian’s Assistant

It feels absurd. And my wife’s case highlights how banal and cruel this hamster wheel can be. The magic number is 35%, beneath which you can no longer claim sick pay benefits. She was first assessed two years ago by UWV and judged 39.1% incapacitated to work, which meant she could rejoin full-time work albeit in a low impact role, such as a ‘librarian’s assistant’.

When she deteriorated and became bedbound we asked for a new health assessment. Following a one-hour call with another insurance doctor from UWV in January, they found her 33.53% incapacitated to work. And then removed all of her sick pay benefits in the middle of the pandemic. I found this cruel.

So, we challenged the decision again, but this time we came armed with a lawyer, called Chantal de Blaeij from De Koning Vergouwen Advocaten. She requested a summary proceeding (known in the Netherlands as a ‘kort geding’) to challenge the UWV decision. After hearing arguments, the judge found the UWV had relied on old medical information and had failed to consult our ME specialist about her condition deteriorating. “Since the applicant no longer receives income as a result of this incriminating contested decision, it would have been for the defendant to properly substantiate this decision,” the ruling states. “That has not been shown.” The decision was deemed ‘unlawful’ and Chantal requested that they retest my wife at home with her present.

This prejudice isn’t just in the Netherlands, it is global. ME patients go from pillar to post in search of legitimacy. “I ended up visiting a neurologist during my fight with the UWV and told them that I only did this because I felt the need to somehow prove I was really sick,” one ME patient told me, asking not to be named.

Ironically, these failings were examined by the Dutch government. Three years ago, a report by the Dutch Health Council into ME, recommended (re)educating medical professionals and other care takers about ME and medical disability assessors to recognize that ME patients “continue to struggle to have their condition recognized as disabling in the face of public and professional prejudice and discrimination.”

A patient support group I contacted for help, called Steungroep ME en Arbeidsongeschiktheid, conducted research which found most patient experiences of insurance doctors was similar to ours. Only 29% of patients said that their diagnosis of ME was accepted by an insurance doctor from UWV, with 12% claiming there to be “no real disease”. 81% of respondents indicated that the insurance doctor did not fully consider the limitations they experience as a result of ME. The UWV also made a habit of ignoring input from specialist ME practitioners, and making far-reaching conclusions based on a one-off, short-term observation.

Searching for reasons

So when the insurance doctor arrived at our house to retest my wife recently, as requested by our lawyer, it was greeted by a mixture of hope, fear and dread. “I wonder what this one believes in?” I said to my wife. “Sinterklaas, the tooth fairy, and maybe somewhere down the line… the condition we know as ME?” We (and many others like us) shouldn’t be put in this humiliating position through inadequately informed insurance doctors. After the meeting I asked my wife how it went:

“I think she believed this is my life, that I am bedbound and that I can’t do anything … to me it looked like she did believe what I said. But time and again she asked me for information that would give her a way to avoid paying me this benefit. If you believe this person is bedbound… why would you look for reasons not to help? At the end, she wished me the best. She seemed like a warm, compassionate person. And yet, she was searching for reasons.”

My wife is a strong woman and has battled ME like a champion despite regressing and dire prognoses. This case is the last thing she thinks of before she goes to bed. And it’s the first thing she thinks of when she wakes up. When she cries, it’s not ME that cracks her up, but this farcical merry-go-round, which she didn’t expect here in the Netherlands. The Dutch brand is built on solving problems, innovating and being progressive pioneers. Things work better here than anywhere else. One of my Australian relatives heard this story and said: “But I thought the Dutch had this shit sorted out?”

Indeed. So did I. But I’m now left wondering.

I hope my wife gets the support she needs and that they find a cure for this insidious condition. We are hopeful of that, but also circumspect about our chances. I know better what we are up against now. A system that prioritizes the hunt for benefits cheats, ignores medical experts, strips you of your dignity and forces you into court on your knees. You end up getting sicker as a result through the stress and anxiety caused by living in a state of constant limbo. It bodes badly for chronically ill patients, such as those with Long Covid, who will need support in the months and years ahead.

A system which can’t handle the nuances of chronic conditions like ME is neither prepared for the future nor fit for the present.

Which brings me back to I, Daniel Blake. None of this happens by accident. The feeling of humiliation, the frustration, incredulity, anger, pain and fear are all par for the course when you’re shortchanged by a bureaucracy. But when people tell me this is a failing system, I strongly disagree with them. Because it is not failing. Quite the opposite. It is carefully designed and calculated to work precisely this way: to grind you down, de-humanize you and keep people like my wife on the bureaucratic hamster wheel. Where they go round and round and round.

Every story matters. If you have a similar story, and want to share your experience, please reach out to me directly on obrienrobe@gmail.com.

Many thanks to the people who shared their experiences and stories with me, and who have generously reached out with advice and tips on managing ME and the UWV.

To learn more about ME go to MEpedia

For ME patient support services in the Netherlands go to Steungroep NL