ME/CFS: ‘You explain to people what it is, or you fight people about what it isn’t’

As advocates your job is to keep on talking, keep on posting and hope that one day things will change.

This is an extract taken from an interview I did with a disability advocacy group based in Canada, who approached me and asked about ME/CFS and the role of advocacy. This is an edited extract of our conversation.

Can you tell us what ME/CFS is?

It stands for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. It’s a multi-system disease which affects people in various different ways, but it generally means that you’re unable to live a healthy life. The prevailing characteristic is fatigue: most patients are operating with their batteries permanently at 10%. It’s a spectrum, so in milder cases people could maybe work, but in my wife’s case, she’s ‘severe’ and bedbound.

I have heard of this disease, but I didn’t know in depth anything about the condition.

Well, that’s part of the problem. There’s not really a lot of understanding of conditions like ME/CFS. There is this massive constellation of different chronic conditions which are largely ignored, misrepresented or misunderstood.

It makes life very difficult for patients because you spend a lot of time explaining to people what it is or fighting people about what it isn’t.

Why are these conditions not catching people’s attention?

It’s an awful, awful predicament that ME/CFS patients find themselves in. You’re not dying and you’re not living. You face daily demands to explain yourself, constant stigma and isolation. It’s horrendous. That is one of the problems with these types of conditions — we know cancer, we know diabetes and we know heart disease. But not conditions like ME/CFS, Chronic Lyme disease, Fibromyalgia, POTS and a whole spectrum of mental illnesses.

From a journalism perspective, I have my theories about this. Chronic illness is not easy to explain, there are no clear cut answers and it requires a bit of commitment to tell the stories. It is much easier to frame them as mysterious, than to admit knowing nothing about them at all. That’s the only reason I can give for ME/CFS still being characterised as a ‘mystery’, that is ‘rare’ and ‘unknown’. That’s the easiest way to justify ignoring it. It’s been around for more than 50 years: the WHO officially recognised it as a neurological illness in 1969. And we’re only talking about it now because of the rise of Long Covid.

Is Long Covid the same thing?

I wouldn’t call it the same thing, but as a post-viral condition it overlaps and shares many symptoms with ME/CFS. One journalist called it ‘ME/CFS by another name’ but that seems to piss off both groups of patients. Let’s just say they are pretty close cousins.

How did you start to write about ME/CFS?

I started writing a few years ago because I was having to constantly explain my wife’s condition to people. It was easier to write an article. She has had ME/CFS for five years: she can’t spend time with our kids anymore, she doesn’t leave the house, can’t stand noise, gets regular headaches and is exhausted by minor activities. It’s an hourly, daily, weekly struggle. For her, it is hard to make sense of it; she had this healthy life and now it’s gone. Now, she’s permanently mourning that healthy life. On top of that, you have to contend with the fact that this condition has no treatments.

And then, quite despicably, you also have people challenging whether your condition is real at all. And that is your life.

What motivated you to become an advocate for your wife?

In the middle of the pandemic, we got a phone call from the Dutch government benefits agency (they are called UWV) and they said they were going to remove her sick pay benefits. This came out of nowhere. I thought it was bloody crazy. But over the days that followed I started to think this just isn’t right. As a writer that tends to trigger you into action. It becomes a form of therapy and a way of making sense of a really weird situation. So, the short answer is rage.

Because the Dutch got the decision wrong?

I thought it was an administrative error and that things would work themselves out. It didn’t work itself out. We appealed the government’s decision and we won with the help of a lawyer and got Marjolein’s benefits reinstated in July 2021. But the very nature of the way they removed them in the first place made us feel we had to go further, to ensure this doesn’t happen again.

And you a true believer in advocacy because of this experience?

I’ve always believed in advocacy, but you really notice its importance only when you’re in this kind of situation. And I get why some people’s lives are consumed by advocacy. It becomes addictive. I had to share her story and find ways to get it out there and talk to people. I think this is one of the difficult things.

The ME community is incredibly active online: they are relentless advocates partly because they face these constant challenges.

How do you view the relationship between advocacy and journalism?

I don’t distinguish between them anymore. If you chose to write any story, you’re already an advocate, but I wouldn’t run that argument past a BBC or New York Times journalist. I view advocacy through the lens of journalism, because that is my background and writing a story about this came naturally to me and was quite cathartic in many ways. Also, bear this in mind: most of the people who advocate for ME/CFS are the patients themselves. The small amount of energy they have they dedicate to these activities, on Twitter, on Facebook, on TikTok. I am sitting here caring for someone with ME/CFS, so it’s a good way to use the skills I have to help.

Are some patients afraid that they will be punished for speaking out?

Yes. It’s definitely something I come across in the Netherlands. Some ME/CFS patients are aware that if they do speak out, they may lose their benefits or face ‘problems’ further down the line. There are definitely merits in staying quiet and I quite admire that. But it makes it all that bit crueller, knowing that patients are forced to put their faith and hope in a system which has been proven time and time again to let them down.