Cortney Gensemer, PhD

Scientist @chroniclebioai, patient & science communicator. hEDS, POTS, ME/CFS & complex chronic illness.

[Cortney Gensemer, PhD @CortDoesScience]

@Ini3007 The registry is for any individuals with spinal CSF leak / intracranial hypotension

[Cortney Gensemer, PhD @CortDoesScience]

Spinal CSF leaks come up a lot in the hEDS and connective tissue disease community, and the research base is still thin. One way to change that is data from patients themselves.

[Cortney Gensemer, PhD @CortDoesScience]

@amyrochlin @AndrewCallenMD Yes! I am so excited about this!

[Cortney Gensemer, PhD @CortDoesScience]

Did you know anyone with a confirmed or suspected spinal CSF leak can enroll in ileak registry℠ and contribute data? Every patient's story is unique. Join now and let your data tell your story: https://t.co/OHlVQmo82s

[Cortney Gensemer, PhD @CortDoesScience]

This work is so incredibly heavy at times. But it is also encouraging to all who are suffering, in a way, that we feel this so deeply. It’s so meaningful to patients that people like you and so many others know exactly what it’s like to live it and that those trying to solve it truly get it ❤️‍🩹

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

📢 Published in the final form is the first Delphi consensus on #POTS and #Dysautonomia from the International POTS and Dysautonomia Collaborative! I am honored to serve as a Co-Chair, along with @KSivakoti89360, for this amazing collaborative group - all top POTS/dysautonomia experts. Uniting our colleagues from different specialties across the world, we had only one goal in mind: to improve the care of patients with POTS and Dysautonomia globally. 🌍

🫂 This work is a true labor of love, perseverance, resilience, professionalism and integrity. The paper has been already translated into several languages and shared by different academic, healthcare and government agencies. Thanks to our International POTS and Dysautonomia Collaborative members for investing their own time and effort into this important work! 🙏

@FudimMarat @ArturFedorowski @DH_Lau @DINETorg @HopkinsMECFSC @AANmember @BrainHealth_AAN @Jacobs_Med_UB @UofUHealth @ahsheadache @HRSonline @AASAutonomic

https://t.co/Yvwpq8tWrm

[Cortney Gensemer, PhD @CortDoesScience]

Support for new researchers in the ME/CFS space can be hard to find. These grants are one of the few built to bring scientists into the field. Ramsay applications are open from @PlzSolveCFS for PhD, postdoc/faculty + collaborative awards.
https://t.co/JDTNFxRU9q

[Cortney Gensemer, PhD @CortDoesScience]

@ThePOTSPostman Yes

[Cortney Gensemer, PhD @CortDoesScience]

@tessfalor @ThePOTSPostman Some upright mri quality turns out pretty poor. Flex/extension can also be done supine but doesn’t show the impact of gravity. Sent separate response re: other approaches too.

[Cortney Gensemer, PhD @CortDoesScience]

None of this dismisses correlations and it's important for how hypotheses are generated. It's not just social media, it's scientists in our own work too. Language matters in how we discuss our work in this space, and patients deserve that clarity.

[Cortney Gensemer, PhD @CortDoesScience]

A recurring problem I've noticed in complex chronic illness space online (hEDS, ME/CFS, Long COVID, POTS): association gets communicated as causation.
Finding biological plausibility is easy. Establishing causality is not. 🧵

[Cortney Gensemer, PhD @CortDoesScience]

This matters beyond semantics: premature causal claims narrows the hypothesis space. These are heterogeneous conditions. There will be multiple causes and biologically distinct subgroups. A single-cause narrative should make us more skeptical.

[Cortney Gensemer, PhD @CortDoesScience]

I'd argue multi-omic work is step 1 and 2. The multiomic work is hypothesis generating, not testing it. Large, unbiased and integrated datasets combined with clinical data and collected longitudinally will provide a depth this field has never seen. In a lot of these conditions, the field has skipped this and went straight to narrow hypotheses. These datasets have the ability to generate better ones, which we then test in targeted validation studies.

[Cortney Gensemer, PhD @CortDoesScience]

@amyrochlin @ChronicleBioAI Thank you Amy! And thank you for all you do.

[Cortney Gensemer, PhD @CortDoesScience]

When I decided to leave my academic postdoc, I was nervous. If I stayed in the complex chronic illness space (EDS, POTS, ME/CFS), would my next team understand what it's like to live with these conditions? How much hope patients place in research, and how vulnerable that leaves them?

At @ChronicleBioAI I didn't have to wonder. Our founders get it, and that's what I'm most proud of about being here. I'm grateful to be doing this with people who want answers as badly as our community does.

[Forbes @Forbes]

Sufferers of complex, chronic diseases like POTS and long COVID-19 often spend years searching for relief. This former OpenAI exec started ChronicleBio to find treatments using AI and lots of biological data.
Read more: https://t.co/8MiznwgHLV
📸: Joel Saget/AFP via Getty Images

[Cortney Gensemer, PhD @CortDoesScience]

@ImmunoFever @ChronicleBioAI @fidjissimo @amyrochlin @CODA_research Thank you so much. It means a lot coming from you! There’s so much incredible work happening in this space right now, and I am very excited for what’s to come

[Cortney Gensemer, PhD @CortDoesScience]

@teaze_r I completely understand, and patients can’t wait for the research to catch up