@stillmedea.bsky.social
Anthropologist in the margin
Zeer belangrijke uitspraak. Het UWV en verzekeringsartsen moeten de zwaar beperkende aard van ME/CVS erkennen. Stapje voor stapje worden achterhaalde medische dogma’s ontkracht.
17.07.2025 15:49 — 👍 67 🔁 13 💬 3 📌 1
🟦 ME CVS 🟥 CENTRALE RAAD SCHRIJFT GESCHIEDENIS
🔲 jarenlang zijn de onderzoeksmethodes van Cardiozorg afgedaan als niet-objectief, onwetenschappelijk, quatsch en terzijde geschoven
🔲 de ernst van de beperkingen door PEM en POTS niet erkend
lees er hier meer over 👉 www.linkedin.com/posts/jfaas_...
Former German min. of Health Karl Luterbach in @spiegel.de
@ninaweber.bsky.social
"I don't think we're facing an unsolvable mystery with this disease; it's much easier to understand than some cancers. But the field is underfunded."
“We would need to invest at least one billion euros." 🇩🇪
#ME/CFS
1) While the Netherlands leads in biomedical ME/CFS research, psychosomatics still dominates healthcare.
In a new report 2/3rds of 249 PAIS children and their parents said they felt pressured or forced, for example to follow rehabilitative treatments or go back to school.
Niet te bevatten, deze reactie
30.05.2025 11:25 — 👍 2 🔁 0 💬 0 📌 0
youtu.be/_fEvrpBMt30?...
#drangendwang
#kinderenmeteenpais
#kinderenmetME
#cgtget
#ME
Wat goed dat de NOS hier vandaag zo prominent aandacht voor heeft. Het is schandalig hoe lang mensen met ME al slecht behandeld worden, met therapieën die hen regelmatig juist (veel) zieker maken. Voor welke andere ziekte zouden we dat accepteren?
nos.nl/artikel/2569...
Therapie voor kinderen met uitputtingsziekte ME/CVS in twijfel getrokken
30.05.2025 07:00 — 👍 26 🔁 9 💬 6 📌 6
1) I'm really proud to share that one of the most prominent Dutch medical magazines for doctors, Medisch Contact, has published a short review of our film Doctors as Patients.
When you make a film like this, you hope it reaches beyond the #PAIS/IACC bubble—that it finds its way to healthcare
#column
#varagids
#MEAwarenessMonth – Day 15
2016: ME patient Alem Mathees wins a court order forcing Queen Mary Uni to release the PACE data. The uni’s harassment claims are found to be “grossly exaggerated.” The 2 year ordeal contributed to a severe relapse, and Alem remains bed bound today.
Prachtige review over "Doctors as Patients" door bedrijfsarts Ernst Jurgens die tevens deel uitmaakt van de ME richtlijnen commissies. Het lezen waard. 🙏❤️
www.linkedin.com/posts/bedrij...
#MEAwarenessMonth – Day 2
1986, Dr Ramsay published the first definition of ME. He described a unique form of fatigability, that must be present for a diagnosis. He warned against relapses from overexertion, rejected psychological theories and pointed to biomedical causes.
#MEAwarenessMonth - Day 4
1989, Dr Simon Wessely proposes a new theory: ME patients aren't ill but are unfit and have a fear of activity. He recommends CBT to change beliefs and graded exercise to restore fitness — this model shaped decades of harmful treatment.
1) OMG we did it‼️‼️
In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before.
They speak candidly about their experiences
youtu.be/J0ywwLIfH_w?...
1) Good news: the European call on high-burden, under-researched conditions will likely be renewed in the 2025 work program of Horizon Europe.
#MECFS is prominently mentioned as an example.
1) What it's like to become an adult with ME/CFS? I think this Australian study captures the most important themes quite well.
25.04.2025 08:47 — 👍 28 🔁 14 💬 1 📌 3😔💙
20.04.2025 16:36 — 👍 1 🔁 0 💬 1 📌 0
Deze week staat er een stuk in @groene.nl waarvan ik hoop dat niet alleen mensen die het rechtstreeks aangaat, maar ook heel veel anderen gaan lezen. Het gaat over de strijd van patiënten met long covid én ME/CVS om erkenning en hulp. www.groene.nl/artikel/waar...
21.03.2025 12:36 — 👍 45 🔁 28 💬 3 📌 1
1) How many scientific papers are fake?
A new review argues that fabrication and falsification of scientific results are more common than previously thought. It estimates that that approximately one in seven papers are fake.
mecfsskeptic.com/how...
A letter to Cochrane requesting withdrawal of its flawed, outdated 2019 review of exercise therapy for chronic fatigue syndrome, in the wake of the organization's abrupt Christmas decision to abandon a planned update. virology.ws/2025/02/20/t...
20.02.2025 19:05 — 👍 98 🔁 41 💬 4 📌 1
Vijf jaar na de coronapandemie hebben nog altijd honderdduizenden mensen long covid. Wacht hun hetzelfde lot als ME/CVS-patiënten, die al jaren soortgelijke klachten hebben en veel onbegrip ontmoeten? Of leidt de aandacht voor long covid tot erkenning van beide groepen? 👉 https://buff.ly/4k6bbo0
19.02.2025 07:34 — 👍 36 🔁 19 💬 0 📌 4This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵
29.01.2025 08:57 — 👍 469 🔁 177 💬 20 📌 5
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
Hilda Bastian’s open letter to Cochrane, written on behalf of the Independent Advisory Group, highlights major concerns about Cochrane’s handling of #MECFS reviews. It’s the first step in a series of planned actions. hbprojecttalk.wordpress.com/2025/01/24/i...
24.01.2025 07:10 — 👍 32 🔁 18 💬 0 📌 3Excellent blog. Here's my post on the Cochrane mess: virology.ws/2025/01/24/t...
24.01.2025 07:46 — 👍 36 🔁 16 💬 1 📌 1
Also, a personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them theconversation.com/ignored-blam...
11.11.2024 09:22 — 👍 56 🔁 24 💬 1 📌 3
This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...
18.10.2024 06:39 — 👍 955 🔁 489 💬 48 📌 75
It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
www.theguardian.com/commentisfre...
I wrote an op-ed for the NYT about what reporting on long COVID has meant to me—how I approached it, the impact it had, and how it taught me to be a better journalist.
This piece is sort of a manifesto for a journalism grounded in compassion, rigor, and care.
www.nytimes.com/2023/12/11/o...
