On Friday afternoon, 28 August 2026, Mayor Femke Halsema presented Anil van der Zee with a royal honour in recognition of his years of exceptional dedication to people with ME and other post-acute infection syndromes (PAIS). The ceremony took place in Anil’s darkened bedroom and was carefully adapted to what he is able to tolerate because of his illness.
Anil van der Zee is an advocate for people with ME and other PAIS and, as a volunteer with the ME/cvs Vereniging, contributes his expertise to scientific research. He has severe ME and has lived in near-complete physical isolation for thirteen years. Despite his isolation, he has become an influential voice for people with ME and other PAIS, as well as a valued interlocutor for patients, doctors, and scientists.
Royal Honour Ceremony
Halsema wore trainers and dark clothing, did not wear perfume, and spoke softly. Rather than giving a speech, they had a conversation. As pinning on the honour would have required physical proximity that was too demanding for Anil, the mayor handed the honour to him instead. Halsema and Anil were the only people in the room during the ceremony. A royal honour has never before been presented under such circumstances in the Netherlands.
Outside the apartment building in IJburg, Mayor Halsema was welcomed by around fifteen people who play prominent roles in the field of ME and other PAIS, as patient advocates, doctors, or researchers. The ME/cvs Vereniging was represented by chair Elzemarij ’t Hart and former chair Lou Corsius. Together with the mayor, they took a special group photo featuring blue ribbons, the symbol of ME.
From the Ballet Stage to a Darkened Room
Anil was a professional ballet dancer in Switzerland when he contracted cytomegalovirus (CMV) in 2007, an infection that goes unnoticed by most people. He did not recover and eventually had to end his dance career. From 2013 onwards, his world became increasingly confined.
“The illness feels like a prison,” Anil previously told Het Parool. Light, sound, and the presence of other people can be severely overwhelming for him. Over the past two years, he has only briefly seen his GP and a nurse who visits him to administer injections.
His best friend and informal caregiver, Frans Hupperts, does visit him at home to bring meals and groceries, look after the cat, and clean. Anil then retreats to another room so that they do not see each other.
Fred Verdult, a friend who stepped in for Hupperts several times over the past six months, says: “The most heartbreaking moment for me was his birthday. I came to bring him something, but even then, the best thing I could do was leave again as quietly and quickly as possible without seeing him.”
Building a Public Platform from His Bed
Anil: “I want to emphasise that I am not an activist or a patient advocate. I hate being described that way. I am ill and I want to get better. I do this out of necessity.”
From this isolated situation, Anil has created a new platform for himself. He follows international scientific developments in ME and other PAIS, shares and interprets new findings, and speaks out critically when he feels that the patient perspective is not being sufficiently taken into account.
On behalf of the ME/cvs Vereniging, he is involved in scientific research as a volunteer. Researchers who work with him say that his input has improved studies in concrete ways, for example by contributing to patient information, research measurements, and the assessment of participant burden and feasibility.
Through social media, Anil reaches thousands of patients, families and loved ones, healthcare professionals, and researchers in the Netherlands and abroad. He uses film and photography to shed light on what it means to live with a severe chronic illness. In 2025, working from his bed with the help of people he coordinated remotely, he produced the documentary Doctors as Patients. It features five doctors who are no longer able to work because of a post-acute infection syndrome and who share their experiences. The documentary has been viewed tens of thousands of times.
“The Sicker I Became, the Less Care I Received”
“The sicker I became, the less care I received,” Anil said in an interview with Trouw earlier this spring. According to Anil, many doctors lack sufficient knowledge about severe ME, and physical symptoms are still too often interpreted as psychological.
The honour also shines a light on a large group of people who, because of their illness, often become almost completely excluded from public life. Of the estimated 650,000 people in the Netherlands living with ME or another PAIS, more than 100,000 are thought to be severely or very severely ill. This means that they are barely able, or completely unable, to leave their homes.
The ME/cvs Vereniging therefore sees the honour not only as recognition of Anil’s exceptional dedication, but also as an opportunity to draw attention to people with ME and other PAIS. The Association calls for more biomedical research into these diseases, with the aim of developing effective treatments in the future, as well as greater recognition, medical care, and support for people who are living with these conditions today.
Elzemarij ’t Hart, chair of the ME/cvs Vereniging: “We are proud of Anil van der Zee and express our great admiration for his years of dedicated and tireless commitment to people with ME and other PAIS.”
From the Letters of Support for Anil’s Nomination
Elzemarij ’t Hart, ME/cvs Vereniging
Almost every day, Anil posts information about scientific and societal developments. He provides critical commentary on these publications and places them in context.”
Jos Bosch, project manager, NMCB national research collaboration on ME/CFS and PAIS“
“I have come to know Anil van der Zee as an exceptionally effective bridge between the patient community, science, and public opinion.”
Guus Liebrand, initiator of the #NietHersteld campaign
“Anil is an exceptional source of knowledge and has played a crucial role for many years, both nationally and internationally, in informing healthcare professionals, scientists, policymakers, and journalists and keeping them focused on the issues that matter.”
Lou Corsius, father of Céline Corsius, who passed away in 2023
“Céline felt that he truly listened to her. Something that patients with this severe illness rarely experience.”
Frans Hupperts, best friend and informal caregiver
“He has a gift for bringing people together.”
Betsy van Oortmarssen, Steungroep ME en Arbeidsongeschiktheid
“Anil can help healthcare professionals and scientists address the blind spots that still exist far too often when it comes to ME.”
Jolien Plantinga, Platform voor Artsen met PAIS Nederland (PAN)
“The fact that, despite the severity of his illness, he still makes time to help others with ME is commendable and, in our view, deserves recognition.”
Documentary Prison of M.E.
Anil also created the 12-minute film The Prison of M.E., which offers an intimate insight into his daily life with severe ME. You can watch the film here.
Film of the Conversation with Mayor Halsema
Using professional equipment, Anil also recorded his conversation with Mayor Halsema. He is publishing the recording through his YouTube and Facebook channels, Anil about ME.
