NZ_fund_MECFS 🦋

It’s the end of the world yet you’re not gone. Until you finally are.

#MECFS
#LongCovid
#PostVac
#NotRecovered
#MillionsMissing

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

"Pacing" means dying slowly. It is a concept designed to silence us. It is meant to make us and others believe that we now have a method that allows us to live. No. It simply means surviving and delaying death for as long as possible.
We need urgency in therapy research!
#MECFS

[Martin @MartinMoltke]

None of this research is ever translated into actual new drug discovery/exploration…so where does more research get us? There is more needed in diff targeted areas however so much is duplication & all the research in world is worthless if targeted drugs aren’t dev & trialed..

[Memorial ME Victims R.I.P. @MemorialME]

🖤#RIP Kyra S. *27.3.2005 - †23.6.2026🖤

Kyra war schwerst an #MECFS erkrankt, wie alle #VerySevereME erhielt sie keine Hilfe!💔

In einem ehemals sozialen Staat werden immer mehr junge Menschen in Suizid u. Sterbehilfe getrieben!
Wie lange noch?
@BMG_Bund
@ninawarken
@DoroBaer

[Julie Rehmeyer @julierehmeyer]

I'm looking for someone in New York who can go ASAP to St Anthony's Hospital in Warrick, Orange County, to advocate for a very severe, barely speaking patient and explain ME and MCAS. It's the worst situation I've witnessed in the US. Please help if you can.

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@CK65375 Fachgespräch 🤡

[Jack | amatica health @JackHadfield14]

As we enter the next era of biology, where speed is critical, we have to revisit our tolerance for risk.

The medical research system would rather a million people die waiting than risk 10 in a trial that pushed the envelope to verify a theory faster. Deaths from delay are invisible, so they never count against anyone.

That has to change. We need a compassionate use system that lets people take on their own risk by choice, while capturing the data properly so every case adds to our understanding of how patients respond to these drugs.

Take Long COVID. If compassionate use were applied well, we would already have a strong read on whether B cell depletion works, and the same for PD-1 inhibitors, IVIG, neuro therapeutics, mast cell depletion drugs, and more.

And as AI gets better at generating theories and predicting risk in advance, we should treat that as the moment to recalibrate the risk we accept and hand autonomy back to the individual.

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@Shawna16086736 Thank you very much for your expertise

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

Since the heat continues my brain inflammation feeling get's worse and worse.
#LongCovid
#MECFS

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@anna_reise87030 @ninawarken WTF 😭💔

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@c3vvno ♥️

[verenabee @verenabee]

@CK65375 Mir fehlen die Worte.

Was für ein grausames. stilles Sterben.

Möge es besser sein, da wo sie jetzt ist.

[Memorial ME Victims R.I.P. @MemorialME]

🖤#RIP Liorah🖤

MillionsMissingFrance:
„Mit großer Trauer müssen wir euch mitteilen, dass Liorah Noémie Ladebourg im Juni 2026 im Alter von 23 Jahren verstorben ist.“💔

Im Gedenken an Liorah, eine Kämpferin, nicht nur für #MyalgicEncephalomyelitis!🕯️

https://t.co/YjOJFFmuaX

[Anil van der Zee © @AnilvanderZee]

@wtogami Have you seen this Dutch research on capillaries? https://t.co/JlBpFoGo9E

[Hoitoharhautettu // Medically gaslit @hoitoharhautus]

When this is the level of fuck-up patients end up in, you know for sure the medical system has failed.

Ain’t no way this is how best care is practised.

I would be so fucking embarrassed.

Ashamed. Mortified.

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@NBoydGibbins It is tragic that, amid all the political squabbles, the public shows absolutely no interest in the long-term consequences.

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@NBoydGibbins I didn't have any problems with my sense of time during the lockdowns or afterward while working from home. But ever since the virus fried my brain I've been experiencing these symptoms and am fully disabled.

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

@ImmunoFever Is there a way to contact you directly by email?

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

Being existentially destroyed in every conceivable way hits different.
#LongCovid
#MECFS

[Christina Koch @CK65375]

Scott has launched a retraction campaign for the WIRED article.

Since he’s not on X, I’m sharing it here.

Please support the effort if you can!

https://t.co/xhuePM4fP0

[NZ_fund_MECFS 🦋 @NZ_fund_MECFS]

Every single second of every day, I'm shocked by what's happening to me. While doing absolutely nothing but lay on the same spot in paralysis. To only feel temperature changes from outside. It must be some kind of lifelong, deadly curse.
#LongCovid
#MECFS

[Memorial ME Victims R.I.P. @MemorialME]

🖤#RIP Mirjam🖤

🪽„Einem Engel, der uns alles bedeutet hat.
💕Einer Liebe, die nie vergeht.
🕯️Einem Licht, das uns immer leuchten wird.“

💔Unendliche Trauer - in jedem Wort der berührenden Traueranzeige schmerzhaft zu spüren...
https://t.co/vVPhk6sRON