iiinova — where your digital self keeps evolving

Anil van der Zee @anilvanderzee.bsky.social · 09/10/2026

"Twenty years after the start of the largest Q fever epidemic in history, Health Minister Hermans offers apologies on behalf of the cabinet. Tens of thousands of people in North Brabant were infected by nearby goat farms." youtube.com/shorts/90Xro... #QVS #QFS #PWME #MECFS #PAIS

youtube.com

Dutch Government Finally Apologizes to Q Fever Community

YouTube video by Anil about ME

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Anil van der Zee @anilvanderzee.bsky.social · 08/10/2026

Sometimes it can feel like things are standing still. Especially for severe ME patients who can't easily participate in research. But in the Netherlands, they are being included. archive.today/8DqOm #pwME #longcovid #QVS #lyme #PAIS #severeME

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Anil van der Zee @anilvanderzee.bsky.social · 07/10/2026

"Ineens begreep ik waarom het maar niet wil vlotten met de zorg voor mensen met ernstige psychiatrische aandoeningen en ME/CVS, fibromyalgie en PAIS. Hun ziekte is niet sexy genoeg." www.medischcontact.nl/opinie/blogs... www.medischcontact.nl/opinie/blogs...

medischcontact.nl

Sorry, uw ziekte is niet sexy genoeg

Wie heeft volgens u meer recht op behandeling? Een patiënt met een hersentumor of iemand met levercirrose? Iemand die lijdt aan een depressie of een patiënt met leukemie? Iemand met fibromyalgie of me...

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Anil van der Zee @anilvanderzee.bsky.social · 28/09/2026

Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them. This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years. #PAIS #pwme

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Anil van der Zee @anilvanderzee.bsky.social · 20/09/2026

Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark. This looks really amazing!! vimeo.com/user10350947... #pwme #myalgicE #millionsmissing #severeME

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Anil van der Zee @anilvanderzee.bsky.social · 18/09/2026

Teenagers and siblings Anna and Moritz have very severe ME. They lie in darkened rooms only meters apart, yet they have not seen each other for almost a year. Watch this short heart wrenching segment from a documentary about ME. youtu.be/NgBPfuMtA6s?... #pwme #severeME

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Anil van der Zee @anilvanderzee.bsky.social · 17/09/2026

Vanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via: www.devragendokter.nl/webshop/prod... #pwme #myalgicE #millionsmissing #severeME #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACC

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Anil van der Zee @anilvanderzee.bsky.social · 16/09/2026

My illness is not part of my identity. Some late‑night, off‑the‑cuff rambling about the notion that some people make their illness part of their identity. This was partly in response to that Telegraph article. #pwme #myalgicE #millionsmissing youtu.be/zFwaPS5c6RI?...

youtu.be

My illness is not part of my identity

YouTube video by Anil about ME

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Anil van der Zee @anilvanderzee.bsky.social · 10/09/2026

For World Suicide Prevention Day. Adult patients affected by ME are at an increased risk of death by suicide, but as a health care professional you can help instead of harm. #pwme #myalgicE #millionsmissing #severeME #suicidepreventionday www.mdpi.com/2227-9032/9/...

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Tom Kindlon @tomkindlon.bsky.social · 08/09/2026

“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee.bsky.social Discusses his Royal Honor” By David Tuller @davetuller1.bsky.social virology.ws/2026/09/06/t... #MEcfs #PwME #SevereME

Trial By Error: Newly Knighted Anil van der Zee Discusses his Royal Honor
4 Comments / By David Tuller / 6 September 2026
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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Tom Kindlon @tomkindlon.bsky.social · 02/09/2026

“Trial By Error: Patient Advocate Anil van der Zee @anilvanderzee.bsky.social Receives Dutch Royal Distinction” By David Tuller @davetuller1.bsky.social virology.ws/2026/09/02/t... #MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME

Trial By Error: Patient Advocate Anil van der Zee Receives Dutch Royal Distinction
2 Comments / By David Tuller / 2 September 2026
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.

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Marc Veldhoen @marcveld.bsky.social · 02/09/2026

When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them. www.nature.com/artic... 1/4

nature.com

When do infections lead to long COVID? Scientists close in on triggers and treatments for post-viral syndromes

Nature - Hundreds of millions of people have long-term conditions as a result of an infection. Researchers are working out how to help them.

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Long Covid Advocacy @longcovidadvoc.com · 06/09/2026

Our statement in response to The Telegraph article: 'How having a disability became cool' Young women, named 'sickfluencers', are turning chronic illness into a lifestyle trend & entrenching a culture of economic inactivity.' by Poppy Coburn, featuring Suzanne O'Sullivan. #longcovid #pwME #POTS

It is disheartening & predictable to see Suzanne O’Sullivan once again given a platform to promote psychosomatic explanations for chronic illness — this time in a Telegraph article attacking disabled people as influenced by social media, identity and attention.

There is a fundamental problem with this framework: it creates a self-reinforcing evidential trap. If patients accept a psychosomatic explanation, it confirms the theory.

If they reject it, their distress is interpreted as evidence that they are psychologically invested in being ill.

If they seek support from other patients, that's “social reinforcement”.

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David Tuller @davetuller1.bsky.social · 02/09/2026

Anil van der Zee @anilvanderzee.bsky.social received a Dutch royal distinction last week! Congrats, dear Anil!! Very well-deserved. I was asked to write a letter in support of the honor and was so pleased to do it. I've posted the letter here: virology.ws/2026/09/02/t...

virology.ws

Trial By Error: Patient Advocate Anil van der Zee Receives Dutch Royal Distinction | Virology Blog

By David Tuller, DrPHLast 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 ...

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Anil van der Zee @anilvanderzee.bsky.social · 01/09/2026

"Wanneer 't contact door de droeve medische situatie verwordt tot eenrichtingsverkeer, wanneer een belletje of bezoekje uiteindelijk helemaal niet meer mogelijk is, kan iemand zomaar uit je systeem en uit je leven sijpelen." www.nd.nl/opinie/colum...

nd.nl

Meeleven met langdurig zieken vraagt een lange adem. Het gaat me soms moeizaam af

Heb je al van ‘PAIS’ gehoord? Je spreekt het uit als ‘mais’, maar dan met een p. PAIS staat voor post-acute infectie syndromen. Denk daarbij aan aandoeningen die langdurige klachten kunnen veroorzaken...

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Anil van der Zee @anilvanderzee.bsky.social · 01/09/2026

Royal Decoration for ME patient Anil van der Zee | NPO Radio 1 / NOS News | 28‑08‑2026 (with subtitles) Yes, to the by journalist @zurhake.bsky.social suggested ME-ologists please!! youtu.be/RGtOD5S5BYU?... #pwme #myalgicE #millionsmissing #severeME

youtu.be

Royal Decoration for ME patient Anil van der Zee | NPO Radio 1 / NOS News | 28‑08‑2026 (with subs)

YouTube video by Anil about ME

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Anil van der Zee @anilvanderzee.bsky.social · 01/09/2026

Het verhaal over mijn lintje staat nu in de fysieke Volkskrant pagina 8. Ik mis op de foto nog een beetje een harnas passend bij het "ME-influencer" ridderschap...😜 #pwme #myalgicE #millionsmissing #severeME

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ME/CFS Science @mecfsscience.org · 30/08/2026

1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau. It's an recognition of his outstanding contribution to society, a very high honour.

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Anil van der Zee @anilvanderzee.bsky.social · 28/08/2026

So, I got royally knighted today. Woot!? Yes, I did. Adopted from Sri Lanka, knighted in the Netherlands. Who would've thought! The most important thing is that this award belongs to the whole community. Everything we do is teamwork. I'll write more after I recovered. #pwme #millionsmissing

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Dr. med. Michaela Bauer @drmichaelabauer.bsky.social · 23/08/2026

ME/CFS ist komplex und oft schwer nachvollziehbar. Deshalb habe ich «ME/CFS verstehen» erstellt: eine kurze, wissenschaftlich fundierte Einführung zu PEM, Pacing, Schweregraden, Forschung, Versorgung und Behandlung. Zum Lesen und Weitergeben: storage.e.jimdo.com/file/a2badbd...

Illustration zu ME/CFS mit verschiedenen Aspekten der Erkrankung: Eine Person liegt mit Schlafmaske in einem abgedunkelten Zimmer, eine Grafik zeigt die Verschlechterung durch Post-Exertionelle Malaise (PEM) nach Belastung mit ungewisser Dauer. Weitere Szenen zeigen Geräuschempfindlichkeit mit Kopfhörern, Brain Fog bei der Arbeit am Computer sowie körperliche Aktivität. Im Zentrum sitzt eine Person mit einem Buch mit der Aufschrift «ME/CFS».

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Tom Kindlon @tomkindlon.bsky.social · 21/08/2026

Poignant words from Anil van der Zee "Not an Advocate. Not Your Silver Lining Porn. Just Desperation" anilvanderzee.com/not-an-advoc... It ends: "I’m really not interested in compliments. I need you to fight with me or for me. For us! We and I need your help moving things forward." #MEcfs #PwME

Photo of Anil's naked body slumped over his electric wheelchair

with the following text

Not an Advocate. Not Your Silver Lining Porn. Just Desperation.
Publicada el August 21, 2026
I’m not a patient advocate. I’m not an activist. I’m just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life.

While raising awareness for ME also keeps me busy, I do not enjoy doing it. I don’t enjoy having to constantly write about it, debunking shoddy science or create awareness art about this disease, so that people get what ME is about. So that we’ll be treated according to what this disease deserves.

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Chris Ponting @cgatist.bsky.social · 06/08/2026

Today is the 1-year anniversary of the #DecodeME genetics preprint. It was an emotional day for many including everyone in the team that delivered the project #pwME #MEcfs @actionforme.bsky.social institute-genetics-cancer.ed.ac.uk/sites/defaul...

institute-genetics-cancer.ed.ac.uk

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valebodi.bsky.social @valebodi.bsky.social · 15/08/2026

To mark #SevereMEDay 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day. Dutch blogger Anil van der Zee responded and offered them this poignant account of what might have been. We were permitted to publish his

meglobalchronicle.wordpress.com

Filmmaker Rolf Orthel: The price of independence, the burden of ME

To mark Severe ME Day 2026, the Dutch ME-info channel ME Centraal asked several national and international bloggers to contribute a piece in honor of the day. Dutch blogger Anil van der Zee respond…

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Anil van der Zee @anilvanderzee.bsky.social · 14/08/2026

A new analysis of the existing fibromyalgia LDN trial found no benefit over placebo on any of the secondary outcomes, with both groups improving at the same rate across symptoms like fatigue, sleep, mood, memory, stiffness and tenderness. www.painmanagementnursing.org/article/S152...

painmanagementnursing.org

Symptom Response to Low-Dose Naltrexone in Fibromyalgia: An Exploratory Analysis of the Randomized Placebo-Controlled FINAL Trial

Fibromyalgia (FM) remains difficult to manage due to a highly variable symptom profile. The “FINAL” randomized, placebo-controlled trial examined the efficacy of low-dose naltrexone (LDN) on pain in w...

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Anil van der Zee @anilvanderzee.bsky.social · 10/08/2026

" #PRT is being promoted as a groundbreaking #pain treatment, but the evidence base is thin, and there is little new to the approach. The risk with the way the method is marketed may be demoralization among both patients and treatment services." www.psykologtidsskriftet.no/artikkel/202... .

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Anil van der Zee @anilvanderzee.bsky.social · 06/08/2026

"Long COVID Patients Deserve Better: Pause McMaster’s FALCON Lightning Process Trial." Please sign! www.change.org/p/long-covid...

change.org

Sign the Petition

Long COVID Patients Deserve Better: Pause McMaster’s FALCON Lightning Process Trial

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Anil van der Zee @anilvanderzee.bsky.social · 05/08/2026

"Unlike earlier studies, they didn’t detect a link between EBV and these signs of #LongCovid. [...] But the team did find an association between anellovirus reactivation and fatigue or other physical challenges." www.science.org/content/arti...

science.org

COVID-19 can wake up dormant viruses in the body, large study confirms

Virus reactivations by SARS-CoV-2 could worsen initial symptoms and increase risk of Long Covid

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Tom Kindlon @tomkindlon.bsky.social · 03/08/2026

From Germany: Associations Between Pre-Quarantine Exercise and Persistent Symptoms After SARS-CoV-2 Infection www.mdpi.com/2075-4663/14... "In our study, neither [Physical Activity] intensity nor duration showed an association with the presence or absence of long-term symptoms." #LongCovid #PASC

mdpi.com

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Tom Kindlon @tomkindlon.bsky.social · 02/08/2026

The Biopsychosocial Model by @longcovidadvoc.com www.longcovidadvoc.com/post/bps From Science for ME weekly update: A thorough & critical look at the origin of the biopsychosocial model & its devastating consequences. The article has an excellent visual summary of its key points #mecfs #longcovid

longcovidadvoc.com

101: 03. The Biopsychosocial Model

To clearly name the problem: The term is accepted in medicine as a common-sense position that on the surface makes a great deal of sense. Yet, there is often a hidden psychosomatic interpretation that...

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Adam @abrokenbattery.bsky.social · 03/08/2026

It’s Severe ME Awareness Week. Here are some highlights from the explainer video on severe and very severe #MECFS I made in 2021. Experts discuss the lack of medical care, swallowing difficulties and tube feeding often being delayed until it becomes life threatening.

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ME/CFS Science @mecfsscience.org · 29/07/2026

🇳🇱 This paper from Rob Wüst's group was published yesterday in Nature Communications. They found several differences between ME/CFS and LC patients and deconditioned participants who underwent 60 days of bed rest 👇

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ME/cvs Vereniging @mecvsvereniging.bsky.social · 30/07/2026

𝗩𝗲𝗲𝗹𝗯𝗲𝗹𝗼𝘃𝗲𝗻𝗱 𝗼𝗻𝗱𝗲𝗿𝘇𝗼𝗲𝗸 𝗻𝗮𝗮𝗿 𝗠𝗘/𝗰𝘃𝘀 Nieuw onderzoek onder leiding van Rob Wüst laat zien dat de spierafwijkingen bij mensen met ME/cvs niet kunnen worden verklaard door alleen conditieverlies of deconditionering.

me-cvsvereniging.nl

Veelbelovend onderzoek geen deconditionering bij ME/cvs 2026

deconditionering bij ME/cvs

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Naomi Whittingham @naomiwhitt.bsky.social · 30/07/2026

I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.

alifehidden.com

The Burden of Chronic Illness That I Rarely Talk About

Being ill is hard. What an obvious thing to say – and yet how often it goes unspoken. I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…

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ME/CFS Science @mecfsscience.org · 21/07/2026

1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.

mecfsscience.org

Cell and tissue enrichment in ME/CFS - ME/CFS Science

By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS

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Anil van der Zee @anilvanderzee.bsky.social · 20/07/2026

Heftig verhaal van Caroline van Kessel, voorzitter van Q-uestion over haar ervaring met QVS. archive.ph/202607191747... #QVS #pwme #LongCovid #PAIZ #PAIS #millionsmissing

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Christoph Bammer 🩺 🎸 @cbammermd.bsky.social · 19/07/2026

open.substack.com/pu... The loud debate surrounding brain-retraining approaches to PAIS incl. ME/CFS, is difficult on many levels. The events surrounding Basel gave me cause to undertake a literature review on the subject, and it’s this text, among others, 1/2

Substack tile: “The Alleged Taming Of The Amygdala. An Expedition through the Land of Promised Healing.”
The Interplay

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