Trial By Error

Tag: anil van der zee

  • Newly Knighted Anil van der Zee Discusses his Royal Honor

    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…

  • Patient Advocate Anil van der Zee Receives Dutch Royal Distinction

    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…

  • Some Things I’ve Read Recently: Anil van der Zee on Sex, “Mold Warrior” Johnson, and a Rant Against the Word “Journey”

    Anil van der Zee says “Fuck M.E.” One aspect of ME and ME/CFS that receives perhaps too little attention is the impact on someone’s sex life. Engaging in sexual activity takes a significant amount of energy—and is therefore likely to trigger post-exertional malaise for many with this illness. Especially for those severely affected, for whom…

  • In a Compelling Documentary, Five Doctors Discuss Being Sick

    I first connected with Anil van der Zee, a severe ME patient in Amsterdam, when he reached out almost ten years ago to invite me to talk at an event he was organizing in Amsterdam. In his former life, Anil was a ballet dancer. Now, from his bed, he creates compelling and often visually stunning…

  • Some Things I’ve Read Recently…in STAT, The Sick Times, Van Der Zee’s Blog

    Embedding ME/CFS in NIH’s RECOVER initiative Ian Lipkin is a well-known professor of epidemiology at Columbia University and director of the Center for Solutions for ME/CFS, funded by the U.S. National Institutes of Health (NIH). In a recent opinion piece for STAT, he and ME/CFS patient advocate Elizabeth Ansell, the founder and executive director of…

  • Anil van der Zee’s New Video on Living with Severe ME

    Anil van der Zee and I first connected in 2016, when he invited me to Amsterdam to give a talk at a screening of Ryan Prior’s documentary about his own illness, Forgotten Plague. Anil was already home-bound from ME; he organized that event from his bed. We didn’t meet during that visit–he wasn’t able to…

  • A Day in the Life of Anil van der Zee

    It is May 12th–ME International Awareness Day. (Or ME/CFS International Awareness Day if you’re the US Centers for Disease Control and Prevention. In Washington, DC, #MEAction and Body Politic have organized a protest and press conference “to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and…

  • Some Stuff to Read and Watch From Rivka, Natalie & Anil

    Massachussetts writer Rivka Solomon has had moderate* [I initially wrote “severe,” and Rivka corrected me.] ME for many years but still manages to get out there (metaphorically) and organize lots of stuff. A couple of years ago, she arranged a talk for me to give about the PACE trial debacle at a Boston-area hospital. She’s…