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Het leed is enorm, evenals de economische schade. Beste overheid, waar blijft sterk beleid?! #NietHersteld #5JaarLongCovid #5YearsLongCovid #LongCovidAwarenessDay2025

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Ondertussen liggen veel Long Covid patiënten al 5 jaar te creperen. En vele PAIS patiënten al decennia - ikzelf dus al ruim 7,5 jaar, waarvan nu bijna 5 vrijwel volledig bedgebonden en in het donker.

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Er gebeurt nu eindelijk wel iets, ook in Nederland, maar het is laat, langzaam en weinig (een druppel op een gloeiende plaat) en er komt maar geen lange termijn en overkoepelend plan. Over adequate preventie is er al helemaal radiostilte.

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Er gloorde ook iets van hoop; met zo ontzettend veel nieuwe patiënten tegelijkertijd, op deze wereldwijde schaal, moest er wel verandering komen toch? Toch...?

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Helaas is de ernst van deze PAIS (Post Acute Infectieuze Syndromen) decennia lang genegeerd en slecht of niet onderzocht. Het was en is enorm heftig om zoveel mensen zoveel aspecten van hun leven te zien verliezen, terwijl jij weet wat voor ellende en gebrek aan zorg hun te wachten staat.

Al snel (bij ons patiënten tenminste) werd duidelijk dat een grote groep patiënten niet herstelde. Geen verrassing zou je denken, want dit was ook het geval bij eerdere SARS en MERS en bij vele andere infecties.

NietHersteld @niethersteld.bsky.social · 03/03/2025

#5JaarLongCovid 5 jaar geleden keek ik, als toen al huisgebonden ME patient, aan de zijlijn mee hoe Covid een ravage aanrichtte.

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🚨5 jaar Long Covid, nog steeds #NietHersteld ! Op 15 maart, #LongCovidAwarenessDay2025, is het tijd voor actie! Want ook al zie je ons misschien niet, we zijn er nog wel. En hoe er nu met deze groep omgegaan wordt kan niet langer! Samen kunnen we van ons laten horen! ✊💙 Doe je mee? #LongCovid🧵

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Kelly @broadwaybabyto.bsky.social · 25/02/2025

It’s hard to explain the hope I had at the beginning of the pandemic. I was scared, but I also thought we were going to become a more inclusive society. We would care more about chronic illness. Having that hope ripped away and replaced with eugenics & fascism has been incredibly painful.

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Naomi Harvey PhD @naomidharvey.bsky.social · 18/01/2025

An off label medication list has been compiled for cover from the Austrian Health Insurance Fund for ME/CFS and Post Covid Sydrome (long Covid) www.meduniwien.ac.at/web/referenz... I’ve used ChatGPT to translate them in the replies below this post in case it helps anyone else 🧵

meduniwien.ac.at

Für Ärzt:innen & Gesundheitsberufe | MedUni Wien

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elle carnitine 🪳 @ellecarnitine.bsky.social · 17/01/2025

Apparently, yet another well-respected figure of Long COVID research has said that we should move past the use of questionnaires and start doing trials using only biomarkers, so here is yet another thread on why that’s confused and harmful to sick people. Buckle up!

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Viv @stillviv.bsky.social · 20/12/2024

💔 sterkte op alle vlakken 🫂

Kelly @broadwaybabyto.bsky.social · 16/12/2024

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Before you judge a disabled person for the way they’re coping with the messiness of life …consider the sickest you ever were. Maybe it was a flu or an infection thst required surgery Try and remember the pain, fatigue & crushing monotony of it Now imagine knowing it would never end. Then be kinder

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Viv @stillviv.bsky.social · 16/12/2024

Interesting background information, I am now even more puzzled (and disappointed!) by the Cochrane decision.

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Tom Kindlon @tomkindlon.bsky.social · 14/12/2024

8-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS

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Viv @stillviv.bsky.social · 09/12/2024

Agree that this is an important missing piece (also in ME research). Plays a big part, especially in severe patients. I could not participate in any clinical trial (even if they would be there) because of this. Even Mast Cell stabilizer I had to start at a tiny dose to not set off the whole system.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 05/12/2024

The last half of the 1990s was when the false image of ME/CFS as a “yuppie“ disease began to crumble, thanks to good work done by Leonard Jason and others like this west coast group. I had been ill for over 13 years before the CDC finally acknowledged that Black people like me could have ME/CFS.

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sarah boothby @swastrosarah.bsky.social · 06/12/2024

Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here. NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME. 🙏 @gwynnemp.bsky.social

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Viv @stillviv.bsky.social · 06/12/2024

Day 10/20 I'm afraid of men by Vivek Shraya #BookSky💙📚 #Books #BookChallenge

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Viv @stillviv.bsky.social · 05/12/2024

Day 9/20 Red star over China by Edgar Snow #BookSky💙📚 #Books #BookChallenge

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Viv @stillviv.bsky.social · 03/12/2024

Day 8/20 Comfortable with uncertainty by Prima Chödrön #BookSky💙📚 #Books #BookChallenge

Viv @stillviv.bsky.social · 02/12/2024

Yes ... Although observing and analyzing them was quite interesting! I found a (hopefully THE) nest today under a house plant, so it should be over soon.

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Viv @stillviv.bsky.social · 02/12/2024

Day 7/20 The Diary of Anne Frank #BookSky💙📚 #Books #BookChallenge

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Viv @stillviv.bsky.social · 30/11/2024

Oh, I loved that book. As an ME patient myself the complete shrinking of one's world really resonated with me. Currently I have (uninvited) ants to observe, but they are pretty fast - would love watching a snail.

Viv @stillviv.bsky.social · 30/11/2024

Day 6/20 The Idiot by Fyodor Dostoevsky #BookSky💙📚 #Books #BookChallenge

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Brian Hughes @bmhughes.bsky.social · 28/11/2024

A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise As ever, the devil is in the detail TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted (Too bad they hid the crucial deets in an online supplement!) cc #pwME #MECFS

thesciencebit.net

That BMJ review of Long Covid therapies does not show what it says it does

The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...

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Viv @stillviv.bsky.social · 29/11/2024

Day 5/20 Another Day of Life by Ryszard Kapusciński #BookSky💙📚 #Books #BookChallenge

Kelly @broadwaybabyto.bsky.social · 28/11/2024

Reposted by Viv

For anyone who needs a reminder tonight - your value is not tied to your ability to work or participate in capitalism. In fact - being disabled IS work. People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy. 🧵

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Viv @stillviv.bsky.social · 28/11/2024

Day 4/20 The dispossessed by Ursula K. Le Guin #BookSky💙📚 #Books #BookChallenge

Viv @stillviv.bsky.social · 26/11/2024

Interesting! It's not sure yet, right - if LC causes thyroid autoimmunity or high Anti-TPO is a risk factor for LC? AFAIK that's a standard clinical test? And if thyroid autoimmunity is found it can be treated just like if not triggered by covid or are there special considerations if LC is present?

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Viv @stillviv.bsky.social · 26/11/2024

Day 3/20 Endurance, Shackelton's incredible voyage, by Alfred Lansing #BookSky💙📚 #Books #BookChallenge

Viv @stillviv.bsky.social · 25/11/2024

What dose are you on? I am not on Mestinon currently, but have started it at some point (but then my doctor left...). I had to start at an insanely small dose to not have bad side effects... Also I've read somewhere that taking calcium (and magnesium) is important - can look that up if you want. Hug

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Viv @stillviv.bsky.social · 25/11/2024

Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers. #BookSky💙📚 #Books #BookChallenge 2/20

The cover of the audiobook Kindred by Octavia E. Butler

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Viv @stillviv.bsky.social · 23/11/2024

Oh, I also really liked that one! I think another book of his, the song of the cell might make it in my 20 🤔

Viv @stillviv.bsky.social · 23/11/2024

It's an autobiography from a neurosurgeon, who gets a terminal diagnosis himself, contemplating about life and death.

Viv @stillviv.bsky.social · 23/11/2024

Fun challenge Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers. #BookSky💙📚 #Books #BookChallenge 1/20

Book cover of When breath becomes air by Paul Kalanithi

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Viv @stillviv.bsky.social · 21/11/2024

Oorlog en vrede? Heeft ongeveer 360 hoofdstukjes dus ook een mooi jaar project.

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Putrino Lab @putrinolab.bsky.social · 20/11/2024

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 1/

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 20/11/2024

Just read the editorial published by the ME Association, and while I won't share it, here's my response: No one claims that bedrest cures ME; rather, it's good to be as active as we can be without inducing PEM. The article is condescendingly written, strawmanning with the intent to agitate.

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Viv @stillviv.bsky.social · 12/11/2024

I've not felt a clear start of benefits from creatine (drawback of starting low and slow). But on it for a year+ now and have some more strength and improved cognition that correlate with starting the creatine. Enough for me to continue. Hope you feel benefit!