By David Tuller, DrPH
A few days ago, I posted a blog about how Anil van der Zee, a bedbound Dutch ME/CFS patient, had been awarded a royal honor in recognition of the many years he has pushed hard to correct misinformation, debunk bad research, organize educational events, and on and on. Amsterdam mayor Femke HalsemaIn presented the award to him in person in his darkened flat. In my blog, I posted a letter I had submitted in support of the community-based effort to obtain the royal honor for Anil. (Athough he is now formally a knight in the Order of Orange-Nassau, I was relieved to find out that we do not need to call him Sir Anil.)
I recently sent Anil a few questions about this well-deserved award. He offered a thoughtful, nuanced and clear-eyed view of what the award means, both to him and the larger community. Below is the interview, which has been lightly edited.
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How are you feeling about having received this honor?
Honestly, I have mixed feelings about it.
First of all, I’m very grateful and flattered that people felt I should receive a royal honor for my efforts. The letters of recommendation, including yours, and the video messages and messages elsewhere really touched me.
That being said, I feel that there are many people doing this type of “work” for much longer than I have, many behind the scenes who receive very little to no credit for it. For me, these efforts are teamwork. Also a lot of what I have done was in collaboration with others. While some things were maybe my ideas, and/or I organized it, it’s not something just done by me. So I also feel somewhat uncomfortable that I received this honor while I think there are many other good candidates as well.
Plus I don’t especially care for awards in general, nor do I enjoy doing this “work.” It’s not a new calling in life. I’m not an activist or patient advocate, although I realize others might label me that way. I have better things to do than having to fight for basic health care, debunking shoddy science and so on. It’s borne out of sheer desperation as a patient in the hope of getting better or at least being sick with proper care. Just being sick without having to fight for other things we’re currently dealing with as patients would already be amazing.
I try to get people to care about our situation so they get up and help us. An award like this may contribute to more inaction because the awarded and designated “activist” patient will do it. Therefore I’m not sure if it’s all positive, but maybe I’m being too pessimistic. Overall there are mostly really positive aspects to this as well. See my response to the other questions.
Were you surprised? I know you knew something was up, because you let me know beforehand that you were having an important visitor and would not have the bandwidth for me to stop by while I was in Amsterdam.
I was very surprised. Normally you’re not supposed to know anything about getting a royal honor. At some point Frans, my best friend and carer, told me a scientist would pass by, which made sense since the ISLC-PAIS conference in Amsterdam was scheduled to be going on during those days. Not knowing who would be coming was too much stress, as a visitor is already too heavy anyway. The element of surprise didn’t help. I need to know exactly who, what and where to expect so I can mentally and physically prepare for it. When I was told I was going to receive a royal honor, I honestly thought it was a joke. I don’t want to nullify my efforts throughout the years, but a royal honor felt a bit much, to be honest. Whatever the case I’m very honored nonetheless.
Could Grigor, your cat, tell there was something special going on?
He was making a lot more noise than normally when the mayor was there so he felt something. He even sat on her lap at some point, which was quite special. He’s a bit scared of tall men. He hisses at them, but the mayor received love.
What did the mayor say?
Honestly, it was a nice talk. She asked several questions about how I felt. How I cope, whether I receive enough care. Whether I’m still able to get outside. How long I lived in the dark. Since I became severely ill due to my noisy living situation, we ended up talking a lot about my housing, care, the high amount of suicide and euthanasia in the ME/PAIS/IACI community and so on. Of course she also offered me the medal.
I gave her a letter to see if we can start some housing project for people with (severe) ME in Amsterdam.
So it was a pleasant meeting. She was very laid back and funny. Really, it was like meeting a friend really. She did seem genuinely taken aback by my situation. I’m hoping she’ll respond.
She never awarded an honor like this before, which made quite an impression on her. It’s a unique meeting of a unique event. I filmed the talk, so I look forward to sharing it. I’ll post it when it’s ready.
Hopefully more patients will receive awards like this. They definitely deserve it.
What do you think this award means for the community?
I think this honor is a big step for the community in terms of recognition of ME and PAIS/IACI. I think that having recognition from the Royal House is important. A while ago, researcher Felipe Correa da Silva mentioned at a conference organized by the Dutch ME/CFS Cohort and Biobank (NMCB) that Queen Maxima specifically asked about ME and Long Covid during a 40‑year anniversary event for the Netherlands Brain Bank. The event was not about ME or LC, so it shows that they are aware of the situation and find it an important topic.
The response from within the medical and scientific community has been overwhelmingly positive as well. Of course, scientists from the “BPS” [biopsychosocial] CBT/GET world may be rather displeased about the fact that I, as a fierce critic of their work, was awarded this honor.
Thus far it was often the other way around, where they were awarded for their “amazing” work in “CFS,” which in varying degrees has been very unhelpful and harmful. It has always been painful and traumatizing that patients are left to rot and die due to their work, yet they’re being praised for it. So to now have a patient who criticizes these developments, the science and the professionals receive honors partly for these factors clearly shows times are changing. It’s part of the paradigm shift we’ve been in for a while now.
So I think this development is something I’m really happy and proud about. I’m honored to be part of that movement. The biggest thank you is for those who helped make this possible. They are heroes.
Thank you!
