Tech Enthusiast - Software Engineer - Health Advocate Co-Founder of NotRecovered.org
Joined May 2012
- Tweets 4,818
- Following 393
- Followers 3,963
- Likes 30,695
163 Photos and videos
Therapy research for ME/CFS may seem like the fastest route to help patients, but it’s also expensive and high-risk.
In the worst case, years of funding could yield negative results while leaving us no closer to understanding the underlying biology.
It needs balance.
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May 29
When I had severe ME, I promised myself I’d fight even harder for people with ME if I ever improved.
Now I’m moderate/mild, but after work and family responsibilities, barely any energy is left. I still try my best, but it is far less than I hoped.
It’s incredibly frustrating.
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May 28
I’m realizing that the photo album on my phone is probably one of the best indicators of my health. The better I’m doing, the more moments I capture. #MECFS
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May 18
My birthday is just a few days away. If you want to make me a small gift and do something meaningful at the same time, please consider supporting my fundraiser for the ME/CFS Research Foundation with a small donation.
Every contribution helps. Thank you 💙
Auch dieses Jahr sammle ich bis zu meinem Geburtstag wieder Spenden für @MECFSResearch .
ME/CFS gilt als letzte große unerforschte Krankheit unserer Zeit, das müssen wir ändern!
Ich freue mich über jede Unterstützung, egal ob Like, Repost oder Spende.
betterplace.org/de/fundraisi…
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May 18
After years of severe ME/CFS, I was lucky enough to spend the last few weeks being "mildly" affected.
Compared to severe ME, mild ME feels almost like a dream.
Compared to the healthy body I had before ME/CFS, it is still deeply disabling and devastating.
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Timo Strotmann retweeted
May 17
ME/CFS affects ~3.3 million Americans. 75% become too disabled to work or attend school.
Patients report among the lowest quality of life of any illness studied — yet NIH research funding amounts to roughly $4 per patient/year and there are 0 FDA-approved treatments.
This is a profound public health failure.
We urgently need:
• Major NIH funding increases proportional to disease burden (~500m/year)
@NIH @Surgeon_General @MEActNet
#mecfs #longCOVID
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Timo Strotmann retweeted
May 9
Big respect and appreciation to all the team at @MECFSResearch for organizing what looked like a really professional and slick conference 👏👏
That's the sort of competence and level we need in this space!
#MECFS #LongCOVID
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Heute das erste mal selbst auf die Straße gegangen, um auf ME/CFS aufmerksam zu machen.
Dankbarkeit dafür, dass es überhaupt möglich ist, gemischt mit Wut darüber, dass so viele Betroffene noch immer unsichtbar bleiben.
400 Teilnehmer in Nürnberg!
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Apr 11
Nach meinem gestrigen Post (gelöscht) habe ich per PM übelste Drohungen und Beleidigungen erhalten. Deshalb ziehe ich mich hier vorerst zurück.
Den konstruktiven Austausch mit euch habe ich sehr geschätzt, aber für mich wurde eine klare Grenze überschritten.
Passt auf euch auf!
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Auch dieses Jahr sammle ich bis zu meinem Geburtstag wieder Spenden für @MECFSResearch .
ME/CFS gilt als letzte große unerforschte Krankheit unserer Zeit, das müssen wir ändern!
Ich freue mich über jede Unterstützung, egal ob Like, Repost oder Spende.
betterplace.org/de/fundraisi…
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Es geschehen noch Zeichen und Wunder: Ich teile tatsächlich einen Post von @tsghoffenheim 😄
Für die Message lohnt es sich aber auch!
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I have an upcoming interview where my improvement with ME/CFS will likely be discussed.
It’s important to me to also highlight those who haven’t had the same luck.
Any tips on how to address this thoughtfully?
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A year ago, I was completely housebound and had to spend my days alone on the couch.
Today, one year later, I was able to celebrate Easter with my family and even go for a short walk. 💛
Endlessly grateful for this progress.
Happy Easter to all of you. 🐣🌷
#MECFS
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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
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Die Resonanz auf diesen Post zeigt, was für eine positive Community wir trotz schwerster Krankheit sind, auch wenn einige das gern anders darstellen wollen
Zudem möchte ich kurz auf die meistgestellte Frage eingehen: „Was hat dir geholfen?“
1/3 🧵
Heute ist ein großer Tag für mich.
Nach ca. 4,5 Jahren mit teils schwerem ME/CFS und Erwerbsunfähigkeit nach meiner COVID-Infektion ist heute mein erster Arbeitstag.
Ich bin nervös, dankbar und ein bisschen überwältigt.
Wünscht mir Glück 🍀!
PS: Kein Aprilscherz.
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Die ehrliche Antwort ist für viele vermutlich ernüchternd: viel Glück.
Ich habe in den letzten 2 Jahren keine neuen Therapien ausprobiert, und trotzdem ging es phasenweise immer wieder bergauf und die Rückschläge wurden weniger stark.
2/3 🧵
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Wichtig anzumerken: Ich bin noch lange nicht gesund und arbeite aktuell nur 10 Stunden pro Woche im Home Office, aber es ist ein Anfang.
Ich hoffe, dass es in der nächsten Zeit weiter bergauf geht und größere Rückschläge ausbleiben.
3/3 🧵
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Heute ist ein großer Tag für mich.
Nach ca. 4,5 Jahren mit teils schwerem ME/CFS und Erwerbsunfähigkeit nach meiner COVID-Infektion ist heute mein erster Arbeitstag.
Ich bin nervös, dankbar und ein bisschen überwältigt.
Wünscht mir Glück 🍀!
PS: Kein Aprilscherz.
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Timo Strotmann 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.
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