Marjolein vs. The Mangrove

In a three-year battle with the Dutch government’s UWV for ongoing disability support, it’s clear we’re not supposed to win. It’s also clear that the Netherlands is set on humiliating and harming ME/CFS patients.

I was upstairs when the phone call came in. There was a pause followed by a muffled cry from downstairs in our Amsterdam apartment where my wife lies during the daytime. We knew the call was coming, but the sucker punch still hurt like hell. After the scream, came the sobbing. And after the sobbing, came the rage. I heard this and ran downstairs with my audio recorder and within seconds I was kneeling by her side as she lost her disability benefits.

Wow, I thought. Did they just do that in a pandemic?

Within seconds the weeds of the bureaucratic mangrove had wrapped themselves around her neck and stole her voice. It was bloody awful. She gasped for air and choked on her own tears. Since ME/CFS took over her life five years ago my wife, Marjolein, has slowly disappeared from public view. A few years ago I told friends she was housebound. Now, I tell them she is bedbound. “I don’t understand this,” she screamed down the phone. “I can’t do anything, I am stuck at home. I can’t look after my own kids.”

This part broke my heart, because it cast me into this awful conversation. I’m the husband-carer. There are quite a lot of us, as this condition disproportionately affects women. But I wasn’t worried to begin with, because when this benefits process started three years ago I thought it would be fairly cut and dry. You can’t leave your bedroom, you can’t hold conversations, surely it’s an open-and-shut case? But that’s not the way this works.

That phone call locked her into a battle between a chronic illness with no cure and an institution that steadfastly refuses to accept that reality.

In the months that followed a kind lawyer helped us appeal against this decision. We won and got Marjolein’s benefits reinstated. Usually, you would take the win and move on. However, to avoid them doing the same thing again next year we appealed for long-term disability support.

This is the process for the chronically ill in the Netherlands, and elsewhere too. Every day people enter the court to hear whether they can claim disability support and end up being punished for having a condition that is not easily diagnosed. And can’t be treated. It is not just those with ME/CFS either, but lots of other associated chronic conditions — POTS, Fibromyalgia, Chronic Lyme Disease, Long Covid. We all run the same gauntlet. Even though ME/CFS was recognized by the World Health Organisation in 1969, recognition among disability assessors is still very poor.

The number of people worldwide now living with ME/CFS is between 17 and 24 million, according to US Centers for Disease Control and Prevention. And due to the Covid-19 pandemic many more are joining the ranks of the long-term chronically ill, due to the prevalance of Long Covid, which shares many symptoms with ME/CFS. Every day, people are fighting for their futures and seeking reassurance and recognition.

But benefits systems like the one we are stuck in now are neither prepared nor informed enough to judge this disease. Or other diseases. Collectively, policymakers, disability assessors, healthcare professionals and judges have combined to create a culture of scepticism and suspicion towards ME/CFS patients. Firstly, medical assessments are conducted by people who don’t know the disease or, worse still, they know about it and don’t believe it is disabling, or, even real. Rather than promoting learning and understanding of the nuances around chronic illness, the UWV packages all patients into a blob of the insoluble and leans prejudicially towards your illness being a temporary situation. One day you will get better. Let’s hope, hey.

I saw these assessments as akin to a lottery. Behind Door 1 is an assessor who understands ME/CFS as a severe, and disabling, chronic condition. Meanwhile, Behind Door 2 is someone who thinks it’s all in your head. Good luck! This is no way to run a social support system.

And then begins a process of delegitimising the disease. Firstly, your qualifying medical tests, in our case undertaken by an ME specialist who is a cardiologist, are ignored or disqualified. For example, there is a hallmark symptom of ME/CFS called post exertional malaise (PEM), which can be measured by a widely used two-day cardio-pulmonary exercise test, which monitors the patient’s heart-rate, breathing and oxygen in the blood. Marjolein visited a clinic to get these tests done so she could show disability assessors — and judges — her physical limitations. But they weren’t accepted as sufficient proof in court.

In the high court, where we go next, the battle can be won by individual medical expertise. To counter ME/CFS patients the UWV uses medical experts to testify that the condition might be psychological, rather than physical. This is controversial, but it’s a strategy that works on two fronts: it directly undermines the patient story, which includes tests, logs and records of their daily physical challenges with the condition, and, it muddies the waters just enough for judges to think twice and rule against them. And the judges do.

At the same time ME/CFS experts are repeatedly overlooked. This pushes patients to think twice about using them. In our case, the expertise of three medical experts were ignored by judges. This isn’t just our experience of the system. This is how many patients are handled in their disability claims. And rather than probing or qualifying this approach, Dutch judges seem obligated to tow the line. Ultimately, patients walk away crying at how prejudice the process is, or laughing at its bias.

It’s a farcical merry-go-round designed to cause patient trauma and harm.

As we meandered through this system, dazed and confused, the weeks have turned into months. We’ve now been on this hamster wheel for three years. Naturally, you feel like criminals — lawyers, experts, courts, procedures and appeals. You battle on knowing this has been designed to make you give up. And the UWV pushes hundreds of cases like ours into court each year arguing that the very slim chances of getting better are reason enough not to offer long-term disability support. Maybe they truly believe patients will get better.

But guess what? Patients don’t get better. Because the process sends them backwards. And on top of the trauma, they add humiliation. Last year, a Dutch man with ME/CFS was forced to appear in court in his own bed. He was driven to his appeal in an ambulance.

A few months after Marjolein’s phone call I wrote this article about this harmful crevasse into which ME/CFS patients fall when they enter the Dutch benefits system. A politician called me up one day and the story found its way into the Dutch Parliament via a patient support group called Steungroep ME en Arbeidsongeschiktheid, which helps patients like Marjolein. A question was tabled in the second chamber, but nothing happened. This is what passes for action these days.

That is because ME/CFS champions in the Dutch government can be counted on one hand. There is certainly not enough to overcome this problem. A report commissioned by the Dutch Health Council in 2018, also highlighted the systemic problems I raise here, and made a series of recommendations to the government. Very little has happened. In the UK, the former Health Minister, Sajid Javid, made a notable stand and initiated a government program to address systemic issues faced by ME/CFS patients. But one champion isn’t going to cut it. Where are the Dutch voices in parliament? Why are they so quiet?

I met my wife in Sydney in 2006. Back then she lived in Amsterdam, made documentaries and was in the cast of Expeditie Robinson, the Dutch/ Belgian version of Survivor. I recently went through all 13 episodes and watched her jumping, swimming, fishing and cooking on a remote beach in the blistering Malaysian heat. The same woman now lies in the room next to me with a blindfold on. She is both light and noise sensitive and quietly moves between two rooms.

That island girl is gone.

Throughout this ordeal I have looked at ways to help. Maybe I should show them what I observe as a carer. And shame them all. For one, this condition disproportionately affects women. They are three or four times more likely to have it than men. With this in mind I started to shoot a documentary, focusing on the tiny geography of her world: her bedroom, her spread of pills, the solitary window that makes up her daily view, the wall hangings around her bed (posters of beaches, sunsets, palm trees), the daybed she lies on downstairs, the school presentation my daughter, Juno, did on her mum’s condition back in April.

At the heart of that Malaysian island where she jumped, fished and swam was this giant mangrove, which acted as a quasi purgatory after eviction from the show. It was a dense, water-logged mass full of snakes and insects. People got stuck there and struggled to get out. It ground people down — physically and mentally — and in the end the mangrove always won.

After I switched off my audio recorder I looked at her face. She shielded it with her hand and started crying. It’s not a cry I have heard before. It is pain, anguish, anger, betrayal, hurt and sadness all rolled into one. That was a year and a half ago. At that moment, she was beaten. I felt I should say something while she cried, but I wasn’t really sure what.

“This has got to be a mistake… it’s got to be put right,” I insisted, with a sense of entitlement. And then I paused. “What do we do now?”

“It’s so fucking cruel,” she said, “They don’t believe I am disabled enough for help.”

Indeed. The Dutch have created a system that cheats, harms and humiliates ME/CFS patients in a way that can be excused as ‘systemic’. When, in fact, it is all too deliberate and calculated. From insurance doctors to disability assessors and judges the system is hopelessly prejudiced against patients. It’s fit for no purpose, apart from preying relentlessly on the chronically ill and disabled. Those are my thoughts, from watching this sorry episode play out. And from talking to dozens of other patients. It’s an unqualified mess.

Once I got back upstairs, I opened up my notepad and scribbled down a title. ‘Marjolein versus the mangrove’. It’s a story about a woman who gets trapped in a giant mangrove. And she fights back and wins.

• Steungroep ME en Arbeidsongeschiktheid supports an initiative to collect stories from ME/CFS patients who have had similar experiences with UWV to ours. To submit your story, got to the link here. Your story counts.