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Anil van der Zee

@anilvanderzee.bsky.social

Former professional ballet dancer | Bed/sofa-bound M.E. patient | Using BlueSky to raise awareness for #MyalgicE | #IACC I #PAIS #art2cureME #pwme #millionsmissing

230 Posts2532 Follower155 Folgt
Tom Kindlon@tomkindlon.bsky.social · 3d ago

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

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...

longcovidadvoc.com

Adam@abrokenbattery.bsky.social · 2d ago

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.

ME/CFS Science@mecfsscience.org · last wk.

🇳🇱 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 👇

ME/CFS Science@mecfsscience.org · last yr.

1) Dutch researchers compared muscle biopsies of ME/CFS and Long Covid patients to healthy participants who underwent 60 days of strict bed rest as part of a NASA study. A brief overview of how ME/CFS and LC differed from deconditioning...

Naomi Whittingham@naomiwhitt.bsky.social · 6d ago

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.

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…

alifehidden.com

ME/CFS Science@mecfsscience.org · 2w ago

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.

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

mecfsscience.org

Anil van der Zee@anilvanderzee.bsky.social · 3w ago

"This virus–virus interaction framework provides a plausible mechanistic explanation for the biology of chronic post-viral disease and highlights herpesvirus reactivation as a potential target for biomarker development and therapeutic intervention." www.cell.com/trends-open/...

SARS-CoV-2 spike-driven reactivation of latent herpesviruses as a mechanistic link to post-viral diseases

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection is increasingly associated with long-term biological perturbations that persist beyond the acute phase of the disease. In this re...

cell.com

Anil van der Zee@anilvanderzee.bsky.social · 3w ago

1) A new tone deaf #CBT for #LongCOVID study based on graded activity. Patients reported a modest, temporary reduction in fatigue right after therapy, but that benefit completely vanished by the three-month mark. Meanwhile, the treatment failed to show www.sciencedirect.com/science/arti...

Cognitive-behavioral therapy for post COVID-19 condition: A pilot randomized controlled trial

The post COVID-19 condition (PCC) is a disabling condition with urgent need for effective treatments. This pilot randomized controlled trial examined …

sciencedirect.com

Anil van der Zee@anilvanderzee.bsky.social · 3w ago

"Which aspects of the intervention were reported to be most useful? In that regard [...] participants were most likely—by far—to pursue “pacing.” [...] the most popular strategy paralleled the standard patient-promoted advice geared toward preventing PEM: Don't overdo it!"

Trial By Error: Can "Cognitive Rehabilitation" for Long Covid "Reverse" Brain Fog? | Virology Blog

By David Tuller, DrPH Cognitive dysfunction, also known as “brain fog,” is among the most disabling aspects of Long Covid—and investigators have struggled t ...

virology.ws

David Tuller@davetuller1.bsky.social · 4w ago

Can cognitive rehabilitation "reverse" cognitive symptoms associated with Long Covid? Yes, according to The Mirror. But that's not what a new study found. virology.ws/2026/07/11/t...

Anil van der Zee@anilvanderzee.bsky.social · 3w ago

Another article about the Dutch study that found reduced or missing CRH neurons in the brain of #pwME. I wasn't aware there were autopsies also being done in Long-Covid. Hopefully the findings will be replicated!! #LongCovid #millionsmissing #severeME www.dmz-news.online/2026/07/12/m...

ME/CFS: Neue Hirnforschung könnte zentrale Rätsel der Erkrankung erklären

Neue Befunde aus den Niederlanden rücken den Hypothalamus ins Zentrum der Erkrankung ME/CFS, das Myalgische Enzephalomyelitis/Chronische Fatigue-Syndrom, ge

dmz-news.online

Anil van der Zee@anilvanderzee.bsky.social · 4w ago

Interesting preliminary study shows that people with #LongCOVID have actual damage to the vagus nerve fibers that normally control the stomach. When they looked at stomach biopsies, they found far fewer nerve fibers, especially the cholinergic (vagal) ones, compared to HC.

Vagal cholinergic denervation of the gastric mucosa in Long-COVID-19: in vivo evidence of structural autonomic dysfunction

Since the end of 2019, a coronavirus pandemic (SARS-CoV-2), responsible for severe acute respiratory syndrome, has spread worldwide. This pandemic, due to the spread of SARS-CoV-2, is similar to two p...

ijidonline.com

Anil van der Zee@anilvanderzee.bsky.social · 4w ago

Goed interview met Piet Gaarthuis over de Ongebroken tentoonstelling en ME in z'n geheel. Zoveel kennis voor iemand die zelf niet ziek is. Wat zou het wat zijn als artsen ook zo goed geïnformeerd waren... Oh, en ja, IDFA here I come! 😊 www.salto.nl/player/radio... #pwme

SALTO Amsterdam - Actueel

Lees hier alle actuele berichten over de programma's, programmamakers, mediapartners, Amsterdamse organisaties en de ontwikkelingen bij SALTO!

salto.nl

Anil van der Zee@anilvanderzee.bsky.social · 4w ago

"Het kabinet dreigt de financiering voor onderzoek naar postcovid stop te zetten. En dat terwijl er honderdduizenden patiënten nog steeds zonder behandeling zitten. Uit wanhoop experimenteren patiënten met schijnbehandelingen." www.ftm.nl/artikelen/ho...

Hoe de overheid postcovid­patiënten ‘in de steek laat’ en daarmee zorgcowboys in de kaart speelt

Het kabinet dreigt de financiering voor onderzoek naar postcovid stop te zetten. En dat terwijl er honderdduizenden patiënten nog steeds zonder behandeling zitten. Uit wanhoop experimenteren patiënten...

ftm.nl

Anil van der Zee@anilvanderzee.bsky.social · last mo.

This pacing‑based rehabilitation and management study showed that right after the 5‑week rehab stay, 45 percent of patients were worse on the Bell Disability Scale, and only 14 percent improved. 😩  Another rehabilitation study bites the dust… #pwme #myalgicE papers.ssrn.com/sol3/papers....

Evaluation of an Integrated Multidisciplinary Care Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a Prospective, Open-label, Non-randomized Controlled Intervention Study

BackgroundMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling condition with limited treatment options and inadequate healthcare structur

papers.ssrn.com