iiinova — where your digital self keeps evolving

Anne Vroegindeweij @thisistheillme.bsky.social · 23/07/2025

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?

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Fen van Rhijn, MD @fvrhijn.bsky.social · 02/07/2025

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?

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Anne Vroegindeweij @thisistheillme.bsky.social · 22/07/2025

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.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 22/07/2025

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/

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The Sick Times @thesicktimes.org · 10/03/2025

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

Photo of a banner reading, “LONG COVID KILLS,” in front of the Lincoln Memorial. The text reads, “The Sick Times. Half a decade of Long COVID. By Miles W. Griffis.” The following slides feature quotes from the story at The Sick Times.

Black text with a turquoise highlight on a white background reads, "I am inspired by the bravery of people with Long COVID who have shared their stories and led the way in the face of so much willful indifference and cruelty. We will face these new challenges fueled by the courage and knowledge we have gained over the past five years. - Miles W. Griffis"

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Anne Vroegindeweij @thisistheillme.bsky.social · 19/02/2025

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.’

groene.nl

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?...

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Anne Vroegindeweij @thisistheillme.bsky.social · 16/01/2025

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

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.

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Niko Suvisto @nikosuvisto.com · 14/01/2025

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

A black and white image. The author of the post is laying in bed, he’s a man in his 30s. He has a beard and a moustache. You can see his head and part of the shoulders. His head is turned sideways and his looking at the distance. The picture is dark, the harsh light is hitting his head and lighting his facial features, like his Roman nose. He is positioned in the left side of the photo and is looking at that direction. Behind his head is a lot of negative space, there is a part of his pillow, that is under is head, and part of the bed is shown.

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Anne Vroegindeweij @thisistheillme.bsky.social · 14/01/2025

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.

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Anne Vroegindeweij @thisistheillme.bsky.social · 13/01/2025

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

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 13/01/2025

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

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Anne Vroegindeweij @thisistheillme.bsky.social · 09/01/2025

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.

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Anne Vroegindeweij @thisistheillme.bsky.social · 08/01/2025

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

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 06/01/2025

Every single person living with M.E. is struggling. We’re facing a system, globally, that doesn’t support us. We all cope in different ways. Many of us are just looking for a little light in the darkness. Be kind. #pwME #MECFS

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ThereForME @thereforme.bsky.social · 07/01/2025

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...

thereforme.uk

“This is not about not trying hard enough”

A glimpse into daily life with very severe ME

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 06/01/2025

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

ru.nl

Postviral Ethics - RCPS & PCNN | Radboud University

Workshop for Post-COVID patients and organisations concerned with Post-COVID.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 05/01/2025

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'. 😭😭😭

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Matt Lazell-Fairman @mfairma.bsky.social · 05/01/2025

🚨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

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Anne Vroegindeweij @thisistheillme.bsky.social · 05/01/2025

Ik wacht al 13 maanden op een eerlijke beoordeling. Hoe ik in de tussentijd mijn huur betaal is geen zorg van het UWV.

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Anne Vroegindeweij @thisistheillme.bsky.social · 05/01/2025

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.

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Anne Vroegindeweij @thisistheillme.bsky.social · 05/01/2025

I wish people cared a lot more about our physical than our mental health. #longcovid

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Erik Verweij @erikpjverweij.bsky.social · 04/01/2025

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.

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Anne Vroegindeweij @thisistheillme.bsky.social · 04/01/2025

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

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Anne Vroegindeweij @thisistheillme.bsky.social · 04/01/2025

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!

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 04/01/2025

#Maraviroc after-effects just keep on giving. Last night, out of nowhere when I was walked inside my house I just suddenly collapsed on the floor. Crazy sh**. No idea what all of this is. #LongCovid

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Kelly @broadwaybabyto.bsky.social · 04/01/2025

When you become disabled - you don’t just lose your health. You lose your autonomy, independence, freedom and often … your friends & family. Help doesn’t magically arrive. No one comes to save you. In fact - most people will blame and abandon you. 🧵

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Anne Vroegindeweij @thisistheillme.bsky.social · 06/12/2024

Been taking low dose rapamycine for 4 full weeks now. Haven't finished the experiment but 3 things so far stand out: 1/

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Anne Vroegindeweij @thisistheillme.bsky.social · 04/12/2024

Jongens, ik weet dat we allemaal voor pampus liggen en je misschien denkt 'heeft toch geen zin'. Maar dit zijn de momenten waarop we van ons moeten laten horen als we kans willen maken op betere zorg en behandeling willen in Nederland. Vandaag nog laatste kans!

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Anne Vroegindeweij @thisistheillme.bsky.social · 29/11/2024

On the phone to my new GP. He listened and prescribed pain medication without hesitation and offered to visit me at home and I feel seen and it's making me emotional which is ridiculous because it's just basic care. #longcovid

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Rien de Böck @riendebock.bsky.social · 29/11/2024

De Tweede Kamer stemt volgende week over onderzoeksgeld voor Long Covid trials. Stuur een email om te laten zien hoe belangrijk dat voor ons is! Er mag wel weer eens actie na niks in het regeerakkoord, 50 miljoen bezuiniging, en na bijna 5 jaar nog geen begin van een langetermijnplan.

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Dame Sa @damesa.bsky.social · 28/11/2024

What do all these diseases have in common? • Tuberculosis • Multiple Sclerosis • Epilepsy • Cancer • Parkinsons Disease • Lyme Disease There were times when the medical profession tried to claim they were psychosomatic. Don’t be that doctor. Educate yourself. #LongCovid #MedSky

Graphic showing all the different symptoms of Long Covid as a multi system disease

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Anne Vroegindeweij @thisistheillme.bsky.social · 24/11/2024

Indefinite #longcovid lock down = all your clothes are newish but terribly out of fashion. Same with all sociatal trends: Having no idea what is happening, what people do, buy, think, talk about, what lives in the outside world. And when I catch a glimpse, it's alienating.

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Guus @guusontheinternet.bsky.social · 24/11/2024

for people that have reacted badly to mestinon, what was your reaction like? I’ve started on a low dose but am not having a good time, but very vague symptoms. it’s one of the last things I can try out - really want it to work 😔 #LongCovid #MECFA #pwLC #pwME

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Anne Vroegindeweij @thisistheillme.bsky.social · 15/11/2024

How long before low dose ozempic is the latest solution for long covid symptoms?

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Anne Vroegindeweij @thisistheillme.bsky.social · 15/11/2024

Het is niet alleen oneerlijk en frustrerend maar ook beangstigend als het UWV besluit dat jij kan werken terwijl je al drie jaar zo ziek bent dat je niet voor jezelf kan zorgen en je je moeder al maanden niet gesproken hebt omdat praten je zieker maakt.

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Anne Vroegindeweij @thisistheillme.bsky.social · 14/11/2024

The only reason I am pro emphasizing severity levels is that milder cases make it into the media, into patient-organisations, and work on campaigns to promote the illness. People should know long covid can mean 1 dark room without almost any noise and sound for years on end. #longcovid

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Guus @guusontheinternet.bsky.social · 12/11/2024

Omdat ik de internationale Long Covid, ME, etc starterpack zo handig vond voor het vinden van wat familiar faces ben ik deze Nederlandse variant net even snel gestart. Ga hem later nog aanvullen! En doe gerust suggesties! go.bsky.app/BkULsee

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Guus @guusontheinternet.bsky.social · 12/11/2024

I’m glad that there are so many familiair faces on here already. I was hestitant to start using Bluesky again, still hadn’t really gotten used to it the last time. But seeing everyone here will make it easier to invest the energy in learning I think!

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Prof Danny Altmann @daltmann.bsky.social · 12/11/2024

I do think that Twitter, as used by science during the pandemic as a real-time info service for common good, now joins ranks of ‘lost stuff from the olden days’ - like record shops, buying a quarter of wine gums at Woolworth. How to get publishers posting journal content and preprints on #Bluesky?

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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 09/11/2024

A #LongCovid German doctor I spoke to this week: "I never thought that we in the Western world, who flew to the moon several decades ago, would now be faced with a problem of this scale - where there is an ever growing need because of ever more patients and 1/2

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Dr. Lucky Tran @luckytran.com · 19/11/2023

It's so wild when someone assumes that the only reason you're wearing mask is because you currently have COVID. It's the opposite: I'm wearing a high quality mask because it's one of the best ways of preventing COVID.

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