By David Tuller, DrPH
Last month, I was delighted to hear that my friend Anil van der Zee, who has been bed bound with ME/CFS for years, had been selected to receive a royal honor for his indefatigable efforts to advocate for patients. The award—Knight in the Order of Orange-Nassau—was presented to him in his flat on Friday, August 29th, by Amsterdam mayor Femke Halsema. Also present was Frans Huppert, Anil’s care-giver and former partner.
The event was covered by leading Dutch media outlets. NOS, a large public broadcasting network, published an article by health care editor Sander Zurhake. de Volkskrant, a major daily newspaper, ran a story with the headline “A critical voice for patients with ME and post-COVID, confined to bed.” Another daily, Het Parool, also highlighted the event, noting the following: “The presentation on Friday was fully adapted to Anil van der Zee’s health, to expose him to as few stimuli as possible. For example, Mayor Femke Halsema wore sneakers and dark clothing, used no perfume, and spoke softly.
The order of knighthood was not pinned on, but presented in the darkened room of his home in IJburg.”
I should have more on this later from both Anil and Frans. In the meantime, I wanted to post the letter of recommendation I wrote on behalf of Anil.advocates were organizing the effort to have him honored, I was delighted to be asked to contribute my thoughts. Below is what I submitted.
Congratulations, dear Anil!!!
(Luckily, this isn’t the UK, so we don’t have to call him “Sir Anil.”)
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Dear Mr Pallemans,
I am a senior fellow in public health and journalism at the Center for Global Public Health, a unit of the School of Public Health at the University of California, Berkeley. For the last ten years, a major part of my academic work has involved critiquing studies of ME, ME/CFS and related complex chronic illnesses that suggest these conditions are largely psychogenic or psychosomatic in nature rather than arising from pathophysiological dysfunctions.
It is through my involvement in this field that I have come to know Anil van der Zee. I wholeheartedly recommend Anil for a royal distinction for his unflagging efforts on behalf of people with ME, ME/CFS and other complex chronic conditions, including Long COVID.
I first became acquainted with Anil-and his prodigious advocacy skills-when he reached out in early 2016 and asked me to speak an Amsterdam screening of “Forgotten Plague,” a moving documentary about ME. I immediately agreed. Anil organized everything while bedbound, all with his phone as his main instrument. Notwithstanding this obstacle, the evening turned out to be a wonderful, meticulously planned event, and it came off without a hitch.
Although I’d hoped to be able to pay Anil a visit and meet him in person on that trip to Amsterdam, it wasn’t to be. He suffered a serious relapse from all the effort he poured into pulling the event together. In the years since, we have maintained an active connection; luckily, we have also been able to meet-for no more than 15-20 minutes-on three occasions.
I am routinely amazed by Anil’s level of engagement and activity despite his extreme situation. After all these years, he remains an extremely effective advocate for people with ME, Long COVID, and other complex chronic conditions, both in the Netherlands and internationally. He is extremely plugged in; he knows and has corresponded with leading researchers, clinicians and journalists. Just as important, while the ME patient community includes a range of sometimes conflicting factions, Anil is widely respected across the spectrum for his intelligence, passion and insight, not to mention his humor and kindness.
As a journalist and public health academic who focuses on this area, I rely on community members for tips, ideas and feedback. From that perspective, Anil has been an ideal advocate for patient interests. When there are news developments in this domain, or when some research team publishes yet another methodologically questionable study, or when yet another ME patient dies from suicide, Anil is likely to alert me and nudge me to look into the issue, or post a blog or article about it, or highlight it on social media. He might also provide me with background details, contact information of someone or other, and other useful links and connections-as well as his own cogent thoughts on the topic at hand.
Just last month, when he knew I was planning to come to Amsterdam on short notice, Anil helped arrange for me to make a public presentation at a Long COVID center. (Unfortunately, I had to cancel because of a family medical emergency, but I hope to reschedule the event for early next year.)
Anil’s extensive online output is a major part of his advocacy. Earlier this year, he released a moving documentary he created, in collaboration with others, about five doctors who are living with ME. He also posts makes haunting videos that offer invaluable insight into his own experiences as a longtime patient, such as The Prison of M.E.,posted last year on May 12, International ME Day. As he told me in an interview, “The reason I made this video is to raise more N awareness for severe ME and also because of the lack of care people with ME, especially severe ME, receive.” His social media posts are uniformly thoughtful, well-written, and widely read.
To reiterate: I am delighted to recommend Anil van der Zee for a royal distinction in recognition of his heroic efforts to highlight the situation of people with ME and related illnesses.
Sincerely,
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
