Petra Lackova

Social environmental scientist.
Environment, agriculture, conservation conflicts, video 🐮🦅 🐑
#longcovid since '22.

[Vlad Vexler @VladVexler]

I am 45 today. I’ve had ME for 23 years and Long Covid for 1.5 years. I planned to spend some time in the wheelchair today, but it turned out to be one of the worst days in months. Party party. So I want to say something general that applies to millions of people across the world: acute chronic illness - like ME or Long Covid - generates uncertainty. How long will this episode last? Will I permanently get worse? Is this something new? What does this mean for my life expectancy? How can I suffer this much and not be dying?

[Zdenek Vrozina @ZdenekVrozina]

A new PECOS study followed children and young people after SARS-CoV-2 infection and compared them with uninfected controls.
The question was simple - do post COVID symptoms in kids fade over the first year?
The answer - not really.

[Petra Lackova @petulela]

@lugaresxcomunes Yes, swollen face definitely a new and visible symptom. Been on it for 4 weeks and the swollen face still going. Definitely works for pain, was unbearable before.

[Tamer Nahed @Tamer_Alnoaizy]

I don’t know if anyone will even care about what I’m saying now but the truth is harsher than any person can imagine.

A large number of children in Gaza are being born with shocking deformities: open spine defects, severe heart abnormalities, missing limbs, deformed heads, and faces that look as if they were burned inside the womb. They come into the world already marked by the war before they even take their first breath.

Mothers have been inhaling rocket gases and toxic smoke for months, drinking water contaminated with explosives residue, and living on soil saturated with toxins.

I saw photos and videos myself of children in extremely difficult conditions unbearable to look at. Babies screaming in pain during their first hours of life, their tiny bodies horribly deformed. Doctors say they have never seen such cases in their entire lives, and they warn: “These deformities are unprecedented and will increase because of the pollution.”

Here, we don’t just suffer from hunger and epidemics we are giving birth to an entire broken generation from the moment they are born. We live inside a giant prison, deprived of medicine, clean food, electricity, and even the basic right to have healthy children.

[🕸️Dr.T, PhD @chydorina]

So, what do you do when your pet theories don't hold water? When it is impossible to keep lying and not get caught? Well if you are a BPS (biopsychosocial psychopath) you change DEFINITIONS.

Easy peasy - change the definition of "recovery" itself.

Now, I know you wanted recovery to mean getting back to your old non-sick self - what is sometimes called "clinical recovery". BUT.... that is simply too much to demand of a medical system that performs procedures that would once be thought of as impossible miracles like organ transplants.

Recovery is now going to be redefined as "a sense of having found meaning and hope while managing to cope with chronic illness." We will call this "personal recovery".

"Personal recovery" essentially means that though you will not physically recover (clinical recovery) you will learn to view your illness in a different light and you will adapt to a new chronically sick state and after a while you will be ok with it.

How you FEEL about your symptoms and illness and how you MANAGE it will be the new criteria for treatment success.

Fuck you Chalder and every one of the biopsychosocial psychopaths.

[Abier @abierkhatib]

I watch this video at least once a week to keep alive the rage I carry in my chest for Zionists and their crimes, I don’t ever want things to feel normal after Gaza.

[Liam's LC/ME Journey @liamsLCjourney]

Excited to present the Severe PEM Crash Survival Guide!

https://t.co/mfZnYjpnY5

At the beginning of the year, I plummeted into an extended bedbound PEM crash for the first time. Mentally and logistically unprepared for how to navigate such a severe situation, this lack of knowledge caused me to crash six additional times, sinking me down into a nightmare state that I hope never to return to.

While at my worst, I vowed to write a compendium of advice so that no one would have to face this experience like I did. Lying still in bed with an eye mask on, I mentally edited this guide every day, adding new things I learned along the way, and now that I can finally use a laptop a bit, I've been able to painstakingly write it up over several weeks!

I found existing guides on surviving PEM bloated, hard to read, and clearly written by clinicians who have never actually been in one. That's why the Severe PEM Crash Survival Guide is specifically formatted with large text, soft contrast, and contains ONLY practical advice written by someone who's actually been through it, with no fluff - not a single word is wasted.

If you enjoyed the guide, please bookmark it and pass it along as a resource so no one has to go through their first (or next) crash alone.

P.S. Writing this was a community effort - thanks to everyone who provided suggestions along the way. And if you have any other edits or fixes, this is a living document, so please leave a comment!

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

ME/CFS is a severely debilitating, neurological illness that dramatically limits the lives of those affected. We can beat this illness, if we acknowledge the problem and focus our efforts. Please consider donating to #MECFS research. #MEAwarenessHour https://t.co/tVov6hYh1m

[Michal Mráz @michallmraz]

Radši bych psal o jiných věcech, ale it is what it is.

"Covid nezmizel, to je snadno pozorovatelný fakt. Realita se neřídí zbožným přáním."

"Adekvátní snaha o řešení long covidové krize iniciována nebyla."

16minut čtení, ale stojí myslim za to

Díky @A_Rychlikova a @page404cz

[Bert @Bert_with_ME]

Does anyone have an ME/CFS hypothesis that explains this phenomenon?

Why do many patients, including myself, report an acute moment where it felt like their brain was concussed/electrocuted, and after that things were never the same again?

[Dario ME Fighter @dario_MEfighter]

I just wanted to live a happy life, instead now I’m studying all the #mecfs pathways, autonomic dysregulation, immune signaling, all the broken little systems inside me. It’s the hell.

[Long Covid Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 @LongCovidScot]

Edinburgh Castle lit up tonight for Long Covid Awareness Day.

A huge thank you to the Castle team and Helen at Long Covid Kids for helping shine a light on Long Covid.

#LongCovidAwarenessDay #LitForLongCovid

[Nina A Tomei, MD @doctormom63]

My daughter, who is bedridden from chronic illness, has written again.

"You’ll die and die everyday and still wake up breathing and older..."

https://t.co/ZJVvLFfMwk

#MECFS #LongCovid #pwME #POTS #chronicillness #disability #Sjogrens #EDS #grief #chronicmigraine #endometriosis #gastroparesis #CCI #neuropathy #dysautonomia #fibromyalgia #chronicpain

[Zdenek Vrozina @ZdenekVrozina]

Na HHS už běží nový Long COVID hub Invisible Illness: Long COVID. Aspoň nějaká snaha držet long COVID jako samostatné chronické onemocnění v oficiální komunikaci a dávat pacientům centralizované informace. V Česku mezitím pokračuje ostuda státu, kliniků, akademie, aktivistů i médií, že pacienti zůstali neviditelní, bez systémové opory i bez elementárního zastání. @szupraha @ZdravkoOnline @adamvojtech86 @adamkova_vera @strakovka

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

To do this, we have created a short (~5 min) survey, open to English-speakers age 18 years or older from any country who is:
• A patient with diagnosed or suspected MCAS, OR
• A carer of a patient(s) with diagnosed or suspected MCAS

Link: https://t.co/eP6qhwv884

[Chris 🏳️‍🌈 @ungenesbar]

"Can we prevent #MECFS crashes, David Putrino?"

That's what we asked @PutrinoLab at last year's International ME/CFS Conference organized by @MECFSResearch. Here are his answers to this and other interesting questions!

Enjoy 🧑‍🔬!

#longcovid #postcovid

https://t.co/7pMo5YRdZ9

[Petra Lackova @petulela]

@StatusCoup Thank you guys

[Status Coup News @StatusCoup]

BREAKING: ICE SHOOTS ANOTHER IN MINNEAPOLIS, TEAR GASSING OBSERVERS AT SCENE https://t.co/53Pxe0Hs6e

[Julie Sullivan @CureLongCovid]

Chris Stubenrauch is a scientist who has been living with Long COVID since 2024. He started @longcovidorg this month to make research easier to understand by providing clear, plain-language summaries of newly published scientific studies. It's a great idea and great site. Thank you so much, Chris!