barbarajansma.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

One of the contributors to this wonderful video, pwME Horace Reid, just passed. It’s only 6 minutes and affecting. Well worth the watch. His portion begins at 4:54. #MECFS #LongCovid

submitted 2 days ago • 4 comments

Having Long Covid, I’m at severe risk if reinfected. I’m already pretty isolated. I may never leave my house if this happens.

submitted 2 days ago • 0 comments

Hoezo LongCovid niet objectiveerbaar @zilverenkruis.bsky.social ? Sinds wanneer zit de verzekeraar op de stoel van de wetenschap @zilverenkruis.bsky.social ? @jimfaas.bsky.social op deze manier behandelen is niet alleen schofterig, maar vooral onethisch & tekortkomen in zorgplicht. Schande!

submitted 4 days ago • 1 comment

“White respondents had significantly greater odds of being diagnosed with ME/CFS than non-White respondents. These findings suggest racial disparities in the diagnostic processes for ME/CFS.”

submitted 8 days ago • 0 comments

“Ontelbare berichten op sociale media van lui die klagen dat ze constant ziek zijn en niemand ziet het verband? Het is COVID! DIT is nou ‘leven met CORONA’ Het is n SARS virus dat je hele lijf ontregelt! Wij waarschuwen hier verdomme al 5 JAAR voor! Echt mensen..😤” #LangeCOVID ‘ #Virusplicht ‘

submitted 10 days ago • 1 comment

Eerste stuk obv van het uitgebreide onderzoek van Linda Samplonius en mijzelf: Is de wetenschappelijke aandacht voor long covid genoeg om het verschil te maken, ook voor de groep die al veel langer worstelt met dezelfde klachten? www.groene.nl/artikel/mist...

submitted 15 days ago • 2 comments

Er zijn veel overeenkomsten tussen ziekten als ME/GVS en long covid. Laten we hopen dat dit tot meer onderzoek en, uiteindelijk, behandeling leidt. Boeiend artikel van Jop de Vrieze en Linda Samplonius. www.groene.nl/artikel/mist...

submitted 15 days ago • 0 comments

Over 'freedom of speech' gesproken.

submitted 16 days ago • 0 comments

#LongCovid People: where does it hurt? Me:

submitted 20 days ago • 0 comments

"As of February 11, Long COVID is no longer included in AskJAN’s directory of disabilities. The website’s Long COVID resources — which previously included information about the disease’s legal status, key symptoms, and suggestions for accommodations — are also unavailable." #LongCovid #pwME

submitted 22 days ago • 1 comment

#LongCovid

submitted 24 days ago • 0 comments

We think of the body as a map’: a new approach to deciphering long Covid. Great to see this work by @oonaghcousins, Maaret Jokela-Pansini, and Beth Greenhough on the potential of body mapping in communicating long covid covered in the Observer today www.theguardian.com/society/2025...

submitted 46 days ago • 2 comments

Interesting discussion of the immune system and similarities between Long COVID, Gulf War and ME/CFS. “Clinically you cannot tell them apart”

submitted 67 days ago • 2 comments

submitted 80 days ago • 13 comments

pmc.ncbi.nlm.nih.gov/articles/PMC...

submitted 74 days ago • 0 comments

Jarenlang documentaires voor gemaakt. Spijtig en dom besluit van @vpro.nl, vooral omdat de geestelijke ruimte die Tegenlicht heeft bevochten niet meer terug zal komen na afschaffing, zeker niet bij kijkcijfergeile netmanagers. Klap voor het onderwijs ook, dat gebruik maakte van talloze uitzendingen

submitted 79 days ago • 34 comments

In Memoriam: Byron Hyde (*8 augustus 1936 - † 17 november 2024) mecentraal.wordpress.com/2024/12/01/i... & www.facebook.com/MECentraal/p...

submitted 94 days ago • 0 comments

Long COVID appears to be driven by ‘long infection’. Here’s what the science says This is a headline that makes bold claims. But is it justified or is it much more nuanced? theconversation.com/... 1/4

submitted 94 days ago • 6 comments

Long Covid isn’t FND. Pass it on. www.mdpi.com/2075-4426/14...

submitted 100 days ago • 16 comments

Twee plaatjes 1 Agema: meer erkenning Long Covid. 2 Het rapport in haar hand: 94% patiënten ervaart geen erkenning vanuit overheid. Patiënten zien het verschil tussen woorden en daden. We zien dat de regering geen plan heeft. Dat de Tweede Kamer geen debat over... Lees verder x.com/riendebock/s...

submitted 100 days ago • 2 comments

I ask myself whether i would have shown the empathy to #pwME and supported their cause if I had not had ME. If i was explained like this, I would have definetely stopped being an ignorant a**hole 🙂#GreatestMEdicalScandal

submitted 100 days ago • 0 comments

From populists on the right, but also from establishment figures desperate to bury their responsibility, there's an ongoing push to bury the harms of COVID. Long COVID alone costs 7M life-years (QALYs) and on the order of a trillion dollars a year in the OECD. www.oecd-ilibrary.org/social-issue...

submitted 100 days ago • 34 comments

436,365 published, peer reviewed science papers on Covid, with vast evidence of the great harm Covid infections cause to the body and mind, brain and heart. Ignored by the vast majority of politicians, media, medical profession, academia, public health leaders. www.ncbi.nlm.nih.gov/research/cor...

submitted 110 days ago • 21 comments

Zuid-Afrikaanse schrijver en anti-apartheidactivist Breytenbach op 85-jarige leeftijd overleden

submitted 101 days ago • 0 comments

Brainfog = feeling my toe humming so checking my watch to see if someone is calling me.

submitted 104 days ago • 0 comments

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/

submitted 105 days ago • 68 comments

Elon Musk just called the COVID-19 pandemic that killed at least 1.4 million Americans a “scamdemic.” My dad died during the pandemic; we weren't able to visit him in the hospital because of it. Every aspect of that horrible tragedy was real. And exacerbated by Musk’s co-POTUS. I’m seeing red. 😡

submitted 107 days ago • 1879 comments

She had to post a video to prove that she's slowly dying of hunger and cold with her tree children, 😥 Repost please.

submitted 107 days ago • 3 comments

If you have experienced or care about #MedicalGaslighting #FalsePsychologization #Stigmatization of #LongCovid #MECFS or other complex chronic diseases, I can highly recommend to watch Prof. Georg Schomerus' #UniteToFight2024 conference talk. Heartfelt and validating. Thank you @geschom.bsky.social!

submitted 108 days ago • 0 comments

Hier een nuttige starter pack for de PAIS gemeenschap. go.bsky.app/XrAbwL

submitted 107 days ago • 0 comments

Drie crowdfunding acties voor de #longcovidtoolkit vormen de top drie op geef.nl ! We bundelen kennis over interventies die kunnen helpen. Steun jij www.longcovidtoolkit.org ook?

submitted 107 days ago • 0 comments

‘Hart sprak over het leren loslaten van onderdrukte emoties die volgens haar bijdroegen aan symptomen. Saunders schreef over langzame maar gestage verbetering toen ze een potplant kreeg om voor te zorgen’ Het problematische van verhalen over herstel👇

submitted 107 days ago • 1 comment

Een nieuwe hobby, een bonzai ervaring achter glas.

submitted 108 days ago • 1 comment

ME, whether acquired after COVID or not, is about watching - with perfect discipline and minimal emotion - your life drift away in slow motion.

submitted 108 days ago • 6 comments