MECFSsince2011

Every night I die quietly in my bed, and every morning I wake up to the funeral of myself.

[MECFSsince2011 @MECFS2011]

It’s a tale. Told by an idiot, full of sound and fury, signifying nothing. #MECFSisHELL

[Christoph Ströck @cstroeckw]

Ein kurzes Update in Sachen Newsletter:

Wir haben inzwischen etwas mehr als 300 Newsletter-Anmeldungen. Vielen Dank an alle, die sich bereits eingetragen haben!

Unser Ziel sind 1.000 Anmeldungen bis Ende August. Das bedeutet, dass uns noch etwa 700 fehlen. Ich wäre jedem sehr dankbar, der den Newsletter abonniert!

Außerdem planen wir die Einführung eines WE&ME Blogs auf unserer Website (im Herbst/Winter). Dort sollen Patientinnen, Angehörige, Wissenschaftlerinnen und Ärztinnen zu Wort kommen. Der Blog wird zT in den Newsletter integriert werden.

Es gab auch vereinzelt technische Probleme bei der Newsletter-Anmeldung. Ich kenne die Details nicht, aber soweit ich weiß sollten diese inzwischen behoben sein.

Falls ihr euch noch nicht angemeldet habt, würde ich mich sehr freuen, wenn ihr das nachholt. 💙

[Anil van der Zee © @AnilvanderZee]

Wow, I don't think I've ever seen this before!!

In Austria there is a government concept on how those affected by ME can receive better care. But it has not yet been approved.

In this clip, four former health ministers appear to advocate for the issue.

#pwme #millionsmissing

[Lisa.t @Lisat89133876]

I wanted to know how many days in my life I am sick now and its been nearly 11300 days. 31 years.
31 years of pacing. Can't even wrap my head around it. The length a person will go just to have a bit of life

[Carole Bruce @CaroleBruce17]

Getting an #ME diagnosis, or waiting for one, is like being given a life prison sentence without any chance of appealing. We are trapped in a world where few bother to imagine the privations, the abuse and the hopelessness of living with this illness year in year out. My child👇

[Katy B @KatyBruce108]

I've had #ME for 39 years, 2026 has been my worst year, extra demands last year due to the DWP, has lead to deterioration
With no treatments ME can always get worse & after 39 years there's STILL no cure, no care or support & Drs & HCPs are STILL not educated in #ME

#pwME

[ME/CFS Science @mecfsskeptic]

1) The WE&ME Foundation has launched a major international call for ME/CFS research in collaboration with the Science for ME forum.

It aims to fund 7 projects with a budget of €120,000-180,000 per project.

The stage 1, short proposal, deadline is 25 August 2026.

[Vlad Vexler @VladVexler]

ME is a totally different planet, one most people believe cannot exist.

[Dr. Markus Fraczek @MarekSJF]

Following the unsuccessful Immunoadsorption for ME/CFS randomized controlled trial (IA-PACS-CFS), another Immunoadsorption for post-COVID RCT has also failed.
https://t.co/9D7bbElDe8

[Christina Koch @CK65375]

Ihr erinnert euch vielleicht an die kleine Annabelle, die schwer an #MEcfs erkrankt ist? Ihre jüngere Schwester Mathilda hat nun ebenfalls die Diagnose. 💔
Mir sind mittlerweile so viele Familien bekannt, in denen mehrere betroffen sind.
https://t.co/DU9tnIoJfv

[Arf-PEM-Jansen 🪫 @dokter_Arf]

@NeleHelena Because no one understands the fact there is basically no end to possible deterioration.

There is no hard minimum limit to human existence with ME/LC

[Nicholas Boyd-Gibbins, MEng, PhD @NBoydGibbins]

ME/CFS always feels like it needs its own language

How to describe the feeling of facing every hardship without ever being able to go for a walk to take yourself out of a situation, or go for a beer or run or breath some cold night air or be reborn from the sea or..

[Carole Bruce @CaroleBruce17]

From Prof Chris Ponting, advice on treating #ME #LongCovid
#RCPsychIC

[Christoph Ströck @cstroeckw]

Since I've been asked repeatedly, and because I want to express my gratitude to the people and researchers involved, here is the panel for the latest WE&ME funding call.

The jury consists of 7 members in total: 4 researchers, Maureen Hanson (Metabolism), Chris Ponting (Genetics), Michal Tal (Immunology), and David Putrino (Neuroscience), as well as 3 patient representatives, with an additional 2 patient representatives serving as backups. The patient representatives from Science for ME will remain anonymous and were nominated by the Science for ME committee.

I want to again express my sincere thanks to everyone who agreed to take this on and contribute their time, expertise, and judgment to the process. It is deeply appreciated. 🙏💙

[WE&ME Foundation @weandmecfs]

📢 New funding opportunity in ME/CFS research.

The WE&ME FOUNDATION has launched its first independent Call for Proposals to support research on the biological mechanisms of ME/CFS.

Applications will be evaluated by an independent international expert jury.

More information: https://t.co/v56eIiFIK2

[Christoph Ströck @cstroeckw]

🚨 Major news for ME/CFS research:

WE&ME has launched a new research call worth over €1 million in total funding, supporting around 7 biomedical ME/CFS projects.

What makes this especially notable, alongside the substantial funding volume from a foundation in a small country, is the degree of patient involvement. Members of the Science for ME (@s4me_info) community were heavily involved in shaping the call and will also play a major role in the review and jury process, helping guide funding decisions themselves. At the same time, the process includes internationally respected ME/CFS experts whose judgment and expertise I trust deeply.

I may be wrong, but this could be one of the most patient-driven biomedical ME/CFS research funding calls of this scale to date.

A huge thank you to everyone involved: the patients, patient advocates, researchers, WE&ME, the WWTF team around Benjamin Missbach, and all partners who helped make this possible.

Most importantly, thank you to everyone who fundraised for or donated to WE&ME. This is where your money is going: directly into new biomedical ME/CFS research.

Please share as much as possible! 🙏

[Christoph Ströck @cstroeckw]

💔

[Carole Bruce @CaroleBruce17]

Five deaths (that we know of) in one week from #ME and yet the psychiatrists still dominate the medical and social attitude that our symptoms are ‘all in our heads’. Where is the outrage from the healthy? Anybody’s health can flip in a moment but denial is more comfortable.

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

🖤#RIP Klaus Schorn 🖤

Klaus hat sich verabschiedet...🥀

Es ist unerträglich, schon wieder ein #MECFS Tod!💔

Wir brauchen politischen u. gesellschaftlichen Druck, damit endlich lebensrettende Medikamente für #MECFS zugelassen werden!

https://t.co/jgvqefd7tb

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

🚨#MEkills🚨
Der vierte Todesfall eines #MECFS Patienten innerhalb nur einer Woche!💔

⚠️Und trotzdem ist die Todesgefahr dieser als Fatigue bagatellisierten Krankheit völlig unbekannt!☠️

[Sera Haldin @serahaldin]

"Mind over matter" doesn't work when matter is the problem. My matter is broken. No amount of positive thinking will fix me. #longcovid #chronicillness