We fight for research, recognition, and care for people whose lives are changed by post-acute infectious syndromes.
Joined October 2022
- Tweets 1,362
- Following 242
- Followers 5,690
- Likes 9,428
350 Photos and videos
NotRecovered retweeted
Apr 5
If there is one good thing that can come out of having my health issues exposed to the world, it’s raising awareness for complex chronic conditions like POTS, MECFS, Long Covid or EDS. 🧵
businessinsider.com/what-is-…
137
190
1,620
238,112
NotRecovered retweeted
Apr 4
In the Bundesliga match between @tsghoffenheim and @1FSVMainz05, players and referees gathered on the pitch before kickoff with a clear message: CURE ME/CFS!
Another powerful and successful campaign by EmptyStands.me
7
83
340
7,668
NotRecovered retweeted
Mar 24
Hey @JacobTref,
Congratulations on stepping into your new role tackling some of the hardest problems in medicine.
There is one condition I strongly encourage you to put on your radar early: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
ME/CFS is one of the most severe and neglected chronic diseases that is not rare. In its worst forms, patients are completely bedridden, unable to tolerate light, sound, or human interaction. Quality of life is among the lowest of any illness.
Despite all this, research funding has historically been extremely low relative to disease burden, largely due to long-standing mischaracterization and bias, including the fact that many patients are women.
ME/CFS sits at the intersection of immunology, neurology, and metabolism, involving complex multi-system dysfunction. This is exactly the kind of problem where AI can have an outsized impact by integrating complex data and uncovering hidden leads.
Please take a closer look. Your involvement could make an extraordinary difference to millions affected.
Thank you 🙏
Mar 24
AI will help discover new science, such as cures for diseases, which is perhaps the most important way to increase quality of life long-term.
AI will also present new threats to society that we have to address. No company can sufficiently mitigate these on their own; we will need a society-wide response to things like novel bio threats, a massive and fast change to the economy, extremely capable models causing complex emergent effects across society, and more.
These are the areas the OpenAI Foundation will initially focus on, and in my opinion are some of the most important ones for us to get right. The Foundation will spend at least $1 billion over the next year.
@woj_zaremba, co-founder of OpenAI, will transition to Head of AI Resilience. I believe that shifting how the world thinks about safety to include a Resilience-style approach is critical, and I am extremely grateful to Wojciech for taking on this role.
Wojciech has been my cofounder for the last decade; anyone who knows him will understand what I mean when I say he is one of a kind. He has a lot of ideas about how we build a new kind of AI safety.
@JacobTref is joining as Head of Life Sciences and Curing Diseases.
@annaadeola, our VP of Global Impact, will transition to Head of AI for Civil Society and Philanthropy.
@robert_kaiden is joining as Chief Financial Officer.
@jeffarnold is joining as Director of Operations.
7
56
288
26,872
Feb 12
This is the list of demonstrations in Germany around ME/CFS Awareness Day in May, more cities will follow.
It shows how large and impactful ME/CFS activism in Germany has become.
We would love to see more cities around the world join the protests.
🔹️#LiegendDemo Awarness Days Update🔹️
🔸️Info: Grafschaft Bentheim ist am 09.05.2026
Weitere Städte folgen...
Wenn du mit deiner Stadt dabei sein willst, dann melde dich bei uns! 💪
Live Updates auf mecfs-info.de
42
101
2,229
NotRecovered retweeted
Feb 12
The NIH Director, @DrJBhattacharya, indirectly calling out MDs worldwide for failing to recognize, among other conditions, ME/CFS is certainly a step in the right direction. Paraphrasing him: unless you’re an amazing doctor who is honest and compassionate, you will want to move on to the next patient.
Feb 11
NIH Director Dr. Jay Bhattacharya says Covid vaccine-injured patients were gaslit.
Now, he says, the NIH is working to help them.
“You have patients with conditions that are poorly understood, and the medical system will gaslight them.”
“They tell you it's a psychological issue rather than a physical issue.”
“It's going to make you think that you're crazy.”
“We have investments in this [Covid vaccine injuries], and we’re going to have more investments in it starting this year.”
@NIHDirector_Jay @DrJBhattacharya
5
15
74
4,432
NotRecovered retweeted
Feb 7
Incredible work by @MECFSResearch. This demonstrates that meaningful ME/CFS research infrastructure can be built, and scaled with private funding. There is definitely still room to grow in Germany, and successes like these need to be replicated across Europe.
Forschende können sich jetzt bewerben:
ME/CFS Research Foundation startet das Research Funding Programme 2026.
2 Mio. Euro für biomedizinische #MECFS - Forschung in Deutschland.
Bewerbungsfrist: 30. April 2026. 🔗 mecfs-research.org/researchf…
2
31
138
3,912
NotRecovered retweeted
Feb 1
Es wäre äußerst wichtig, dass auch in der Schweiz eine spezifische ME/CFS-Research-Stiftung bzw. Charity gegründet wird. Falls es jemanden gibt, der dieses Thema ernsthaft angehen möchte und dafür vielleicht noch Startkapitalhilfe benötigt, bitte melden. Danke! 🙏
5
25
89
2,125
NotRecovered retweeted
Jan 28
The national decade for post-infectious disease in Germany is an important step. But it is nowhere near sufficient to solve ME/CFS. If the US, Japan, China, the UK, and the EU as a whole do not massively scale up, the outlook remains somewhat bleak. That's why we still and urgently need far more private funding, for both biomedical research and political advocacy.
24
141
3,290
NotRecovered retweeted
Jan 24
One of the bigger opportunities for progress in ME/CFS research lies in the creation of independent national research charities.
In particular, larger European countries as well as initiatives in China, Japan, and India appear especially important, as these regions hold a significant amount of currently dormant and/or growing scientific (and capital) potential. Other regions are, of course, also relevant.
If anyone with a reasonable chance of success and a background that makes such an effort credible requires seed funding to establish such an ME/CFS research charity, they are welcome to contact me directly.
2
9
60
1,515
NotRecovered retweeted
Jan 23
When one medical assessor declares you fit for work while another considers you eligible for assisted dying, you know you have ME/CFS.
11
152
738
18,265
Jan 15
“Dad, I can’t live like this, please kill me.”
These are the words of a child in Germany severely affected by ME/CFS.
We urgently need more research, better care, and proper recognition of this disease — in Germany and worldwide.
berliner-zeitung.de/mensch-m…
4
17
481
NotRecovered retweeted
30 Nov 2025
During this reflective holiday season, we call on everyone to pull together.
Just €5 a month can make a real difference: many small contributions create a strong foundation for #MECFS & #LongCovid research – for >1.5 million people affected. 🎄🎅 👉 mecfs-research.org/spendenab…
25
84
3,326
NotRecovered retweeted
28 Oct 2025
ME/CFS Fellowships 2026 – now open!
6-month research stays with up to €40,000 per fellowship (total €200,000), co-funded by the WE&ME Foundation & WWTF. Deadline: February 3, 2026, 2:00 PM.
More infos: wwtf.at/funding/programmes/e…
1
38
88
9,140
NotRecovered retweeted
16 Nov 2025
If Germany invests 50 million/year into ME/CFS research, proportional GDP scaling would imply the following annual budgets for the other top EU economies: France ~34M, Italy ~25M, Spain ~18M, Netherlands ~13M, Poland ~9M, Belgium ~7M, Sweden ~6.5M, Austria ~5.5M, Denmark ~4.5M.
7
24
149
6,823
NotRecovered retweeted
14 Nov 2025
Germany has taken a massive step for ME/CFS and other post-infectious diseases. The government is pledging 500 million Euro over the next ten years for biomedical research that finally investigates the actual causes of these illnesses. Is it enough to solve the problem? No. Is it the first genuinely good step? Yes. It is an order of magnitude more funding in Germany than we had five years ago and twice the NIH budget when it was at its miserable peak. It is also a massive success for German advocacy.
This shows that Germany and Europe can be true thought leaders. They can be proud of this, because it sends a strong signal for medical research and development across Europe. Austria, although its institutional funding is structured very differently and cannot be as focused at its much smaller scale, is already moving in a good direction (more good news to come!) and this signal will help to increase funding even further. Germany, the Netherlands, Austria and Europe as a whole will be leading the way at least until the US found its swagger again.
But, obvioously, there is still a long road ahead. Education, awareness and advocacy must keep pushing, and we must not become complacent. This is a big win but only the beginning, really.
15
74
367
15,641
NotRecovered retweeted
15 Oct 2025
Amazing powerful protest for ME/CFS(and long covid) in from of Germany's ministry of research. Body bags symbolize patients left without medical help and research for their condition. LC ME advocates, take notes. Humanitarians take a look at yourselves and ask why are you absent.
15 Oct 2025
Jetzt vor dem Bundesforschungsministerium in Berlin.
Presse und Politik sind da.
Gerne vorbeischauen.
3
102
378
12,477
NotRecovered retweeted
14 Aug 2025
The “psychologisation” of ME/#CFS has been part of the problem as we’ve said before and, sadly, will keep having to say. As a psychologist, it’s especially important to be clear and amplify: every year, science confirms more — this is a biological illness. tinyurl.com/mtaap45f
23
189
561
19,757
8 Aug 2025
The @DecodeMEstudy proves it: Well-designed, well-funded research can advance our understanding of ME/CFS, uncover its biomedical roots and pave the way to better diagnosis and treatments.
2
28
535
8 Aug 2025
Silence. Darkness. Pain.
A life fading behind closed doors.
Today, we speak for those who cannot.
23
88
1,619