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.

Can you tell us what ME/CFS is?

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

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?

Is Long Covid the same thing?

How did you start to write about ME/CFS?

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?

Because the Dutch got the decision wrong?

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

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?

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

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Rob O’Brien

Writer & producer based in Amsterdam. Stories for NYT, Independent & Penthouse. I write about people, life experiences, the everyday. Twitter: @robwriting