Tanya

Hoewel long covid en ME/CVS steeds meer erkend worden, krijgen patiënten vaak te horen dat het tussen de oren zit Tijdens de pandemie werd de groeiende groep patiënten met long covid grotendeels genegeerd. ME/CVS-patiënten ervaren dit al decennia. Langzaam leidt hun gezamenlijke strijd om erkenning tot resultaat....

Deel 2 van een inhoudelijk stuk over o.a. de onterechte psychologisering van de ziekte ME/cvs en de schrijnende gevolgen daarvan voor patiënten.

Lauren een vriendin van mij komt ook aan bod. Zij vroeg en kreeg vorig jaar euthanasie door deze ziekte. 1/3

www.groene.nl/artikel/waar...

Duizenden mensen zijn #niethersteld van corona.

Op deze #LongCovidAwarenessDay2025 spreken velen zich uit over hun leven.

Wat zij doormaken raakt me en het maakt de noodzaak duidelijk voor meer onderzoek, voor breed toegankelijke post-covid-zorg en voor een goed sociaal vangnet.

💔❤️

Must watch explainer on the ME/CFS scandal!

😢😢 so sorry

People heroically say, “I’ve never let my illness define me”
Of course illness defines me. If I hadn’t spent 32 years in bed without effective medical attention I would be a completely different person.
Healthy people, you live in a different world, you don’t know it until you lose it.
#ME #LC

I love this. Who knows who wrote it?

“It’s difficult for us humans to understand that chronically ill people are just visiting us from another world in their better moments when we interact with them”

#pwME #MEcfs

Replicated findings ME - LC Replicated findings ME / LC Muscle biopsies ME 1985 Behan https://pubmed.ncbi.nlm.nih.gov/2993423/ LC 2023 and 2024 (scheibenbogen / wust) Blood brain barrier ME 2001 https://www.sciencedirect....

Here's a Google sheet I made with a few additions (it's by no means complete, everyone feel free to add things)
docs.google.com/document/d/1...

What life can become for the millions of people living with the medical condition myalgic encephalomyelitis (ME/CFS). When even the most basic everyday activities are out of reach. #pwME #MillionsMissing

If they had taken ME/CFS seriously from the beginning instead of stigmatizing it — how many of us would have our lives back? It’s really really disturbing.

#LongCovid #MECFS #PostViralIllness

Afbeelding waarop in een grijs/bruine tint met een soort waterverf 3 vogels in een lijn omhoog vliegen. Rechts bovenin staat ‘Lauren’ met daaronder ‘27-01-2024’

Om 13:55u is Lauren overleden. Het ging rustig en snel. ❤️‍🩹🕯️

We gaan je zo erg missen lieve Lauren. 💛

#DagLieveLauren
#ReMEmberLauren
#MECFS

When I was still young and naive I thought that when you get sick, there is a model of a decision tree. You have disease X or Y and there’s treatment A, B or C. You either live or die.

Never in my life I imagined there was a disease that has no decision tree whatsoever.

#MECFS

I think that is so true

I hear you! I reckon it's because if they admit to themselves that we are trying, they have to also admit that it could happen to them - and they wouldn't be able to fix themselves either. And that is too terrifying a reality for most people.

Why is it, that when you’re sick and not getting better, people automatically assume you must be doing something wrong.

Nobody says “I see you’re trying so hard”.

While we’re trying so hard.

#MECFS

When you go out off your survival mode having #MECFS you’re suddenly in no man’s land. Because your life as you knew it is gone. And you’re still to sick to build a new one.

People often say “it must be so difficult to let go of all of your future plans” because of being chronically ill. And it is difficult.

But what they don’t understand is that it’s even more difficult to survive this specific day. Or even the next hour.

#MECFS

💙

So sorry to hear that 😣

The most painful thing about #medicalgaslighting and #medicalPTSD is self-doubt. Am I imagining my disease? Aren’t they right? My own former colleagues (psychologists) think #MECFS is a psychosomatic disorder.

…. aren’t they right? I hate this feeling.

As a psychologist, I feel ashamed.

This article was placed in a professional journal about cognitive behavioural therapy (CBT).

The truth is, if I had read this before I got sick with #MECFS, I would have believed it. This is what we are taught.

#Longcovid