Anne Vroegindeweij
@thisistheillme.bsky.social
🇬🇧: Severe ME & long covid
🇳🇱: Auteur van 'De achterblijvers' (Uitgeverij De Geus)
🏳️🌈
🇳🇱: Auteur van 'De achterblijvers' (Uitgeverij De Geus)
🏳️🌈
Pinned
Thinking of 3 years ago, when I laced up my runners for interval training right after mild covid. Raising my HR to the max. I did that 3 days a week without problems until I suddenly collapsed and I've been bedridden ever since. I wish I'd known where I was running myself into. #longcovid
The way people -leaders- won't look at Gaza, the same way they refuse to lay eyes on us, let alone help us. And we're all supposed to accept and integrate that into our psyche somehow? How?
July 23, 2025 at 7:36 PM
The way people -leaders- won't look at Gaza, the same way they refuse to lay eyes on us, let alone help us. And we're all supposed to accept and integrate that into our psyche somehow? How?
Reposted by Anne Vroegindeweij
I hate hate hate it that doctors are still trying to make our lives worse at every turn they can. Whyyyyyy. How hard is it to listen to patients?
July 1, 2025 at 11:29 PM
I hate hate hate it that doctors are still trying to make our lives worse at every turn they can. Whyyyyyy. How hard is it to listen to patients?
Not trying off label treatment on severe ME patients equals not believing them imo.
ME can be hell.
Severe ME is living death.
People are dying in rapid succession.
Yet fear of side effects and reputational damage prevail.
ME can be hell.
Severe ME is living death.
People are dying in rapid succession.
Yet fear of side effects and reputational damage prevail.
I wonder why everyone is more concerned about courageous doctors prescribing off label treatments for long covid than about how we as patients are gaslit and left to rot in our beds. 1/
July 22, 2025 at 5:28 PM
Not trying off label treatment on severe ME patients equals not believing them imo.
ME can be hell.
Severe ME is living death.
People are dying in rapid succession.
Yet fear of side effects and reputational damage prevail.
ME can be hell.
Severe ME is living death.
People are dying in rapid succession.
Yet fear of side effects and reputational damage prevail.
Reposted by Anne Vroegindeweij
I wonder why everyone is more concerned about courageous doctors prescribing off label treatments for long covid than about how we as patients are gaslit and left to rot in our beds. 1/
July 22, 2025 at 10:37 AM
I wonder why everyone is more concerned about courageous doctors prescribing off label treatments for long covid than about how we as patients are gaslit and left to rot in our beds. 1/
Reposted by Anne Vroegindeweij
Over the coming weeks and months, first-wavers around the world will observe five years with Long COVID. Many already have. Read more from @mileswgriffis.bsky.social: bit.ly/4ictDdi
March 10, 2025 at 1:19 PM
Over the coming weeks and months, first-wavers around the world will observe five years with Long COVID. Many already have. Read more from @mileswgriffis.bsky.social: bit.ly/4ictDdi
De CGT en fysiotherapie die Knoop, van der Meer en Rosmalen propageerden heeft bij patiënten tot verbolgenheid geleid. ‘Vele patiënten zijn enorm achteruitgegaan door deze opgelegde methode. Nu de biomedische kant door long covid oprukt, lijkt het of deze wetenschappers plots hun mening nuanceren.’
Leidt long covid tot de broodnodige erkenning van vergelijkbare onbegrepen ziekten, zoals ME/CVS?
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?...
www.groene.nl
February 19, 2025 at 9:43 AM
De CGT en fysiotherapie die Knoop, van der Meer en Rosmalen propageerden heeft bij patiënten tot verbolgenheid geleid. ‘Vele patiënten zijn enorm achteruitgegaan door deze opgelegde methode. Nu de biomedische kant door long covid oprukt, lijkt het of deze wetenschappers plots hun mening nuanceren.’
Not only an important and shocking article. Also props for selecting a great image. I never truely understood the immense value of representation until I became ill (and the standard image of this illness was a pouting girl with head in hand).
time.com/7206080/long...
time.com/7206080/long...
Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.
time.com
January 16, 2025 at 1:59 PM
Not only an important and shocking article. Also props for selecting a great image. I never truely understood the immense value of representation until I became ill (and the standard image of this illness was a pouting girl with head in hand).
time.com/7206080/long...
time.com/7206080/long...
Reposted by Anne Vroegindeweij
I feel numb all the time. You have to detach yourself from the reality because it’s too painful to live like this. ME/CFS does this to you—it makes you feel empty. 1/9
#MECFS #pwME #photography #selfdocumentary
#MECFS #pwME #photography #selfdocumentary
January 14, 2025 at 1:00 PM
I feel numb all the time. You have to detach yourself from the reality because it’s too painful to live like this. ME/CFS does this to you—it makes you feel empty. 1/9
#MECFS #pwME #photography #selfdocumentary
#MECFS #pwME #photography #selfdocumentary
My cat deposited a craftily murdered, fat pigeon on my doorstep this morning and danced and sang in circles around my bed until I got up to look at my prize.
It's the ONLY thing I don't like about living with a cat.
It's the ONLY thing I don't like about living with a cat.
January 14, 2025 at 11:41 AM
My cat deposited a craftily murdered, fat pigeon on my doorstep this morning and danced and sang in circles around my bed until I got up to look at my prize.
It's the ONLY thing I don't like about living with a cat.
It's the ONLY thing I don't like about living with a cat.
PAIS community! I need your knowledge. You don't have tachycardia but you do get unwell when getting upright. So OI without tachycardia. Question: can beta blockers cause OI type symptoms by preventing hart from working harder to pump blood to brain?
#longcovid #mecfs #pots
#longcovid #mecfs #pots
January 13, 2025 at 9:59 AM
PAIS community! I need your knowledge. You don't have tachycardia but you do get unwell when getting upright. So OI without tachycardia. Question: can beta blockers cause OI type symptoms by preventing hart from working harder to pump blood to brain?
#longcovid #mecfs #pots
#longcovid #mecfs #pots
Reposted by Anne Vroegindeweij
My mom is asking for a group she can donate to who helps disabled people in emergencies. (She’s upset about people dying bc they couldn’t evacuate in time 💔). Centers for independent living, maybe? Mutual aid groups? I honestly have no idea who does the best work in LA or the Bay or elsewhere
January 13, 2025 at 5:38 AM
My mom is asking for a group she can donate to who helps disabled people in emergencies. (She’s upset about people dying bc they couldn’t evacuate in time 💔). Centers for independent living, maybe? Mutual aid groups? I honestly have no idea who does the best work in LA or the Bay or elsewhere
Just the thought of having to evacuate with my disability (severe PEM) is so frightening. My thoughts go out to everyone in this position in California right now.
January 9, 2025 at 6:49 AM
Just the thought of having to evacuate with my disability (severe PEM) is so frightening. My thoughts go out to everyone in this position in California right now.
When you have severe ME, it's quite depressing to have the most ambitious new years resolutions, but non of them involve better pacing and more rest. #longcovid
January 8, 2025 at 9:18 AM
When you have severe ME, it's quite depressing to have the most ambitious new years resolutions, but non of them involve better pacing and more rest. #longcovid
My current mindset and illness believes. #longcovid #mecfs
January 7, 2025 at 3:40 PM
My current mindset and illness believes. #longcovid #mecfs
Reposted by Anne Vroegindeweij
We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME.
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
“This is not about not trying hard enough”
A glimpse into daily life with very severe ME
www.thereforme.uk
January 7, 2025 at 9:25 AM
We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME.
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Reposted by Anne Vroegindeweij
ANNOUNCEMENT: international (hybrid) workshop on POSTVIRAL ETHICS
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Postviral Ethics - RCPS & PCNN | Radboud University
Workshop for Post-COVID patients and organisations concerned with Post-COVID.
www.ru.nl
January 6, 2025 at 1:14 PM
ANNOUNCEMENT: international (hybrid) workshop on POSTVIRAL ETHICS
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Reposted by Anne Vroegindeweij
About the BC007 'placebo effect' - how many times do we need to keep saying that iv saline is NOT a good comperator in studies like these? Iv saline is an active treatment for POTS! When the protocol was released, many patients raised their voices but no one listed, and now 'placebo effect'. 😭😭😭
January 5, 2025 at 1:20 PM
About the BC007 'placebo effect' - how many times do we need to keep saying that iv saline is NOT a good comperator in studies like these? Iv saline is an active treatment for POTS! When the protocol was released, many patients raised their voices but no one listed, and now 'placebo effect'. 😭😭😭
Reposted by Anne Vroegindeweij
🚨Looking to help a #pwME recently made homeless in Canada, currently in Vancouver. If you’re knowledgeable about support services in city or province, could you DM me? #MECFS #LongCovid
January 5, 2025 at 1:21 PM
🚨Looking to help a #pwME recently made homeless in Canada, currently in Vancouver. If you’re knowledgeable about support services in city or province, could you DM me? #MECFS #LongCovid
Ik wacht al 13 maanden op een eerlijke beoordeling. Hoe ik in de tussentijd mijn huur betaal is geen zorg van het UWV.
UWV-CRISIS 🟦 ‘EN WIJ DAN?’ 🟥 HERSTELOPERATIE LAAT ZWAARST GETROFFENEN IN DE KOU STAAN /2
✅ vervolg👇 reportage AD
✅ vervolg👇 reportage AD
January 5, 2025 at 11:11 AM
Ik wacht al 13 maanden op een eerlijke beoordeling. Hoe ik in de tussentijd mijn huur betaal is geen zorg van het UWV.
A world that looks away from Gaza is psychotic imo. And it should not surprise us that the same majority is not caring much about people with #longcovid either. As long as they made it out of the pandemic okay, and as long they don't have to fear bombs and gunfire themselves.
January 5, 2025 at 10:31 AM
A world that looks away from Gaza is psychotic imo. And it should not surprise us that the same majority is not caring much about people with #longcovid either. As long as they made it out of the pandemic okay, and as long they don't have to fear bombs and gunfire themselves.
I wish people cared a lot more about our physical than our mental health. #longcovid
January 5, 2025 at 10:27 AM
I wish people cared a lot more about our physical than our mental health. #longcovid
Reposted by Anne Vroegindeweij
De invloed van buitenlandse miljardairs die hun social media platforms met hun volle gewicht in de strijd gooien om de uitkomsten van verkiezingen te beïnvloeden ten gunste van radicaal-rechtse populisten, is misschien wel het grootste en meest urgente probleem waar we het te weinig over hebben.
January 4, 2025 at 4:44 PM
De invloed van buitenlandse miljardairs die hun social media platforms met hun volle gewicht in de strijd gooien om de uitkomsten van verkiezingen te beïnvloeden ten gunste van radicaal-rechtse populisten, is misschien wel het grootste en meest urgente probleem waar we het te weinig over hebben.
Thinking of 3 years ago, when I laced up my runners for interval training right after mild covid. Raising my HR to the max. I did that 3 days a week without problems until I suddenly collapsed and I've been bedridden ever since. I wish I'd known where I was running myself into. #longcovid
January 4, 2025 at 12:15 PM
Thinking of 3 years ago, when I laced up my runners for interval training right after mild covid. Raising my HR to the max. I did that 3 days a week without problems until I suddenly collapsed and I've been bedridden ever since. I wish I'd known where I was running myself into. #longcovid
Leaving Twitter for real. Can't enable that democracy ruining egomaniacs platform anymore. I'll try to post more here and really give it a go!
January 4, 2025 at 11:20 AM
Leaving Twitter for real. Can't enable that democracy ruining egomaniacs platform anymore. I'll try to post more here and really give it a go!