Timo Strotmann @TweetingTimo

Tech Enthusiast - Software Engineer - Health Advocate Co-Founder of https://t.co/0klWgSE1lR timo.strotmann.me Erlangen, Germany Joined May 2012

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Timo Strotmann @TweetingTimo

2 days ago

@btctrader146 I am not recovered, I just improved. Properly just luck and time.

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I’m a huge football fan. During the last World Cup in Qatar, severe ME/CFS meant I could only watch short clips of Germany’s games on my phone. This World Cup, I’m hosting watch parties with my friends. Endlessly grateful that this is possible again. ⚽️

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Christoph Ströck @cstroeckw

2 days ago

ME/CFS is a tractable biomedical problem.

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Timo Strotmann @TweetingTimo

7 days ago

@MarekSJF I see this a bit differently. My assumption is that many uncontrolled studies with positive results are capturing the natural course of the disease far more than genuine treatment effects.

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Timo Strotmann @TweetingTimo

a week ago

I don’t understand how responder subgroups can be inferred from uncontrolled studies. If some ME/CFS patients improve spontaneously, then finding that “some patients improved” after an intervention tells us nothing about whether a true treatment-responsive subgroup exists.

Carmen Scheibenbogen @C_Scheibenbogen

2 weeks ago

Jetzt publiziert: unsere prospektive Kohortenstudie zur hyperbaren Sauerstofftherapie in der #NKSG bei 30 Patienten mit ME/CFS. HBOT war gut verträglich und führte bei einer Untergruppe zu Verbesserung von Fatigue und Schmerzen, die auch nach 12 Monaten anhielt. Auch Handkraft

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WE&ME Foundation @weandmecfs

2 weeks ago

📢 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: weandmecfs.org/weme-projects/

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Christoph Ströck @cstroeckw

2 weeks ago

🚨 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! 🙏

WE&ME Foundation @weandmecfs

2 weeks ago

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Timo Strotmann @TweetingTimo

3 weeks ago

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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Timo Strotmann @TweetingTimo

4 weeks ago

@seanstidston Properly just luck, time and pacing.

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Timo Strotmann @TweetingTimo

4 weeks ago

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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Timo Strotmann @TweetingTimo

4 weeks ago

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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Timo Strotmann @TweetingTimo

a month ago

@christina4hope @MeckerMutti Bitte nicht persönlich nehmen aber ich reagiere inzwischen leider wirklich allergisch wenn ich solchen medizinischen Unsinn Lese. Die Alternative Kinesiologie ist pure pseudowissenschaft!

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Timo Strotmann @TweetingTimo

a month ago

@MeckerMutti War bei mir ähnlich. Mein Zustand hat sich auch ohne NEMs und Medikamente signifikant verbessert so das ich aktuell nur noch mild betroffen bin.

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Timo Strotmann @TweetingTimo

a month ago

@MeckerMutti Stimmt, ich glaube das Problem ist aber auch das es immer mal wieder positive Berichte zu einzelnen NEMs gab. Die sind aber vermutlich auch nur Zufall und lassen sich mit dem natürlich Verlauf erklären den die Krankheit nehmen kann.

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Timo Strotmann @TweetingTimo

a month ago

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 💙

Timo Strotmann @TweetingTimo

3 months ago

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/fundraising…

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Timo Strotmann @TweetingTimo

a month ago

@rachioella Just luck, time and pacing.

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Timo Strotmann @TweetingTimo

a month ago

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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Lukas Barth @LukasBarth54728

a month ago

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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Ror Preston @RorPreston

2 months ago

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