Formerly working in finance/tech in NYC. Now, disabled with #MECFS #LongCovid since July 2025.
New York
Joined October 2025
- Tweets340
- Following238
- Followers252
- Likes2.2K
Bert retweeted
Gisteren verscheen er een stukje in Men's Health @MensHealthMag over ons onderzoek, en waarom ook profatleten long covid kunnen ontwikkelen (en hoe je het kunt onderscheiden van overtraining/gewone vermoeidheid):
menshealth.nl/nieuws/wat-is-…
#coverboy :)
Bert retweeted
Yesterday we held a beautiful PAIS Protest Vigil in The Hague.
We called for long-run research funding like a Decade Against PAIS.
500 people showed up, we made the evening news, were covered in the major newspapers, and had politicians attend!
It was also beautiful 🕯️
1/7
Bert retweeted
Doncaster Free Press: 'Doncaster woman raises £15,000 for research into illness affecting Olympian sister Beth Dobbin'
'The sister of former Olympian sprinter Beth Dobbin says she is incredibly proud to have raised over £15,000 for ME Research UK.'
doncasterfreepress.co.uk/spo…
Bert retweeted
At the Harvard/MIT Martinos Center, Dr. Mario Murakami and the VanElzakker lab are using ultrahigh-resolution 7T fMRI to understand how changes to cerebrospinal fluid (CSF) flow in people with Craniocervical Instability can produce a phenotype similar to that seen in ME/CFS and other neuroimmune conditions.
The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain.
Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”
Bert retweeted
I want to take a moment to explain the @HHSGov TOPx Sprint competition and why it matters so much for patients living with invisible illnesses: ME/CFS, Long COVID, POTS/orthostatic intolerance, EDS/HSD, MCAS and related disorders.
Our collaborative research team has the possibility of securing $1 million to advance diagnostics and treatments for conditions that have been overlooked for far too long.
When Dr. Mikki Tal learned of the competition, she reached out to a group of experts in the field with an idea: bring together a research "super team" that could combine our expertise, technologies, and programs to accelerate progress.
And the MAESTRO Health Innovators team was born.
Here's how the pieces came together.
@MIT's MAESTRO, the largest clinical study in MIT's history, led by @MIT_TRG, focuses on collecting meaningful physiological and biological measurements from patients with complex chronic illnesses to better understand what's happening in their bodies and identify actionable biomarkers.
Through this work, researchers began exploring the promise of nailfold capillaroscopy, a quick, noninvasive way to visualize the tiny blood vessels near our fingernails. Could this technology help reveal abnormalities in the microvasculature that might otherwise go undetected? Could these measurements help us better understand disease mechanisms and ultimately guide treatment?
From this promising line of investigation, MIT CAPRIO was born, with the ambition of creating the largest nailfold capillaroscopy dataset and studying whether these measurements can help identify meaningful biological patterns across patients.
At the same time, @CODA_research launched the CODA Vascular Initiative, to advance diagnostics and treatments focused on microvascular dysfunction (problems affecting the body's smallest blood vessels) and endothelial dysfunction (when the cells lining blood vessels fail to properly regulate blood flow, inflammation, and clotting).
We also launched CODA's AI research program to help researchers analyze complex data, identify patterns across biological systems, and accelerate scientific discovery.
And here's where bringing these programs and experts together gets really exciting.
Our team developed Measure it to Cure it, an AI-powered platform designed to help answer some fundamental questions: What should we be measuring in patients? Which measurements can meaningfully distinguish illness from health? And how do we get promising diagnostic technologies into the hands of clinicians and patients who need them?
The platform already connects 37 public data sources, bringing together information on disease burden, research evidence, clinical trials, healthcare facilities, and emerging measurement technologies.
CAPRIO provides a real-world opportunity to test this approach, starting with nailfold capillaroscopy. The team plans to expand capillaroscopy efforts, creating opportunities to collect data, evaluate the technology, and help more patients access objective testing.
And this approach can extend beyond capillaroscopy to other technologies that measure what's happening inside the body.
For too long, patients have lived with debilitating symptoms while being told their tests look normal. We need better ways to measure the physiological and biological abnormalities that may be driving their illnesses.
We want to make the invisible visible.
That's what this competition represents . An opportunity to bring extraordinary researchers together, build on the science already underway, and accelerate the path toward meaningful answers and better treatments for patients.
Voting will start soon and we hope you're support this collaborative effort! Our goal will be to include clinicians and other research organizations however possible.
Patients can't wait. Neither will we.
@ImmunoFever @mhornig @TomerTalVH @tylerdmyers @technopolymath Paige Hansen Colburn
WATCH HERE: youtube.com/watch?v=53zp-OtN…
Bert retweeted
1,250 students walking and running around Wallersee for ME/CFS research and WE&ME? Absolutely incredible!
This is what we need much more of to make change happen: young people bringing their energy, compassion and determination to our cause. Showing up for people who so often physically cannot.
As someone who has spent ten years confined to a mattress in one room because of ME/CFS, I am more grateful than I can express.
Everyone at @weandmecfs feels deeply honored!
To every student, teacher and organiser: thank you. Please know how much this matters. 💙🙏
salzburg.orf.at/stories/3376…
🤖 Made with AI
Bert retweeted
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Bert retweeted
1) Just watched the presentation by Dr. Hanna Ollila titled "The Future of MECFS Genetics".
Her team did the fibromyalgia genetic study and her background is in sleep genetics and brain autoimmunity. She gave a good impression and presented findings from a big meta-analysis.
Bert retweeted
Athletic's Weekly: Beth Dobbin: ‘I feel like I’ve lost everything’
Beth Dobbin, who ran for Great Britain at the Tokyo Olympic Games in 2021, now spends more than 22 hours a day in bed as she battles myalgic encephalomyelitis (ME), BBC Sport has reported
athleticsweekly.com/news/bet…
Bert retweeted
1) 🇳🇱 Good news: Felipe Correa da Silva, the researcher leading the brain tissue analysis in ME/CFS, announced that he won a new Dutch grant called "Off Road." It is intended for curiosity-driven, high risk, high reward ideas and provides up to €100.000 in funding.
Bert retweeted
British Olympic sprinter Beth Dobbin opens up on 'year of hell' after being diagnosed with M.E. - and reveals she is now bedbound 22 hours a day: 'It feels like you're days away from death' trib.al/rHeHyPg
Bert retweeted
Ein extrem starkes Signal aus dem Wiener Rathaus! Auch wenn wir uns noch etwas gedulden müssen: Die Richtung stimmt. Ein großes Dankeschön an @BgmLudwig, sein Team und die Wiener SPÖ für ihren Einsatz für Menschen mit ME/CFS! 💙🙏
We have now raised $39K for @CODA_research, a research foundation focused on ME/CFS, Long Covid, and other complex chronic illnesses.
I am utterly floored by the generosity of this community. Yes, many donations have come from friends & family who would've contributed regardless of the cause, but there have also been plenty of donations from complete strangers in the patient community. Thank you all from the bottom of my heart.
The fundraiser will run for another 2 weeks. Please consider donating or sharing with your network. Keep fighting.
This month marks 1 year of ME/CFS, which I am commemorating with a fundraiser for @CODA_research - we have already reached $18K thanks to the extraordinarily generous support from friends, colleagues, and strangers alike, and me and my family will be contributing an additional $10K. I know many of you have your own advocacy efforts or may not be in a financial position to make a donation, but I urge those who can to please consider supporting this campaign for CODA.
givebutter.com/CODAFUNDRAISE…
I've already written a lot on the fundraiser page linked above, so I will not rehash my story and general musings about this disease, but I do have a few additional thoughts I want to share specifically for the patient community on X.
When I got sick in July 2025, ME/CFS was designated by every major medical authority as a real, biological condition. In the 15+ doctors I visited, I was never told once that my symptoms were psychosomatic nor prescribed GET or CBT. When my friends & family looked up ME/CFS online, they found mountains of research and countless medical professionals offering advice on how to manage the condition with lifestyle interventions and off-label medication. I also found community and hope in the patient and research organizations that already existed.
I understand that my experience has been better than most. I also understand how easy it is to look at the present-day situation with despair - I do it all the time. But I also feel an immense amount of gratitude towards the patients and advocates that have been at this for 5/10/20+ years, fighting for progress even when it seemed to move one inch at a time. Their suffering and activism have made things that much better for everyone who came next, including me.
If you got sick in the UK before 2021, you would've been prescribed GET and CBT based on NICE guidelines that were established based on the infamous PACE trial. It took the heroic efforts of Australian ME/CFS patient, Alem Matthees, journalist, David Tuller, and other advocates to obtain the raw PACE data that, when reanalyzed, proved the trial administrators manipulated their results to produce a positive trial outcome. The result was that NICE formally denounced behavioral/deconditioning disease models and stopped recommending GET & CBT. Matthees' condition reportedly worsened significantly over the 3 years of fighting with the UK courts.
If you got sick before 2012, there were few if any philanthropic organizations researching ME/CFS. SolveME existed and did selectively fund some research but was primarily an advocacy organization. ME Research UK existed as well but was quite small and only deployed a couple hundred grand per year. Today (including Long Covid orgs) there is OMF (founded 2012), Bateman Horne Center (2015), PolyBio (2020), We&ME (2020), Schmidt Initiative (2023), CODA (2025), and others. In aggregate, it is likely tens of millions of dollars that these orgs are deploying into disease research each year.
Are we where we want to be? Not even close. But, as corny as it is, there is no point in history in which you would rather be sick than right now. So, thank you to every patient that came before - all us new patients owe you an enormous debt that can only be repaid by continuing to fight for funding, awareness, and research. I am happy and proud to do my part and plan on doing so for as long as it takes.
Wishing everybody better days ahead. On to year 2.
Bert retweeted
1) 🇺🇸 Leonard Jason announced that his team has received an NIH award for the study "SARS-CoV-2 and EBV-orchestrated activation of the kynurenine pathway."
Bert retweeted
“I can’t even get dressed by myself anymore or press buttons or things like that.”
9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid
Bert retweeted
Thanks @Forbes for featuring the great work we’re doing @ChronicleBioAI.
There are exactly 0 FDA-approved therapies for the hundreds of millions of people suffering from diseases like POTS, Long COVID, MECFS or hEDS. We created ChronicleBio to change this.
By building the deepest dataset on these conditions and leveraging AI, we will understand what the biology behind the symptoms is. From there, we can map the right drugs to the right patients.
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: forbes.com/sites/amyfeldman/…
📸: Joel Saget/AFP via Getty Images
Bert retweeted
Forbes: This Former OpenAI Exec Is Trying To Cure Chronic Diseases, Including Her Own
Sufferers of complex..diseases like POTS & long COVID often spend years searching for relief. The longtime tech exec started ChronicleBio to find treatments using AI..
forbes.com/sites/amyfeldman/…
Bert retweeted
I first met Bert after reading a piece he wrote on LinkedIn about getting sick, never getting better, and watching ME/CFS upend his life. His writing drew me in. His insight into what research is missing for people with chronic illness stayed with me - looking at the whole patient, moving quickly, finding treatments that work.
Since then, Bert has weighed in on CODA’s research, pushed us to make it stronger, and introduced me to patients whose expertise can help move this field forward. He cares deeply about where the science goes and how it will lead to treatments.
Please read his piece on why research matters and why he’s raising funds for CODA now. He’s raised nearly $30K and counting. He and his family have donated $10K personally.
Please consider making a donation. 100% of funds raised with Bert's campaign goes directly to research aimed at effective treatments.
givebutter.com/CODAFUNDRAISE…
This month marks 1 year of ME/CFS, which I am commemorating with a fundraiser for @CODA_research - we have already reached $18K thanks to the extraordinarily generous support from friends, colleagues, and strangers alike, and me and my family will be contributing an additional $10K. I know many of you have your own advocacy efforts or may not be in a financial position to make a donation, but I urge those who can to please consider supporting this campaign for CODA.
givebutter.com/CODAFUNDRAISE…
I've already written a lot on the fundraiser page linked above, so I will not rehash my story and general musings about this disease, but I do have a few additional thoughts I want to share specifically for the patient community on X.
When I got sick in July 2025, ME/CFS was designated by every major medical authority as a real, biological condition. In the 15+ doctors I visited, I was never told once that my symptoms were psychosomatic nor prescribed GET or CBT. When my friends & family looked up ME/CFS online, they found mountains of research and countless medical professionals offering advice on how to manage the condition with lifestyle interventions and off-label medication. I also found community and hope in the patient and research organizations that already existed.
I understand that my experience has been better than most. I also understand how easy it is to look at the present-day situation with despair - I do it all the time. But I also feel an immense amount of gratitude towards the patients and advocates that have been at this for 5/10/20+ years, fighting for progress even when it seemed to move one inch at a time. Their suffering and activism have made things that much better for everyone who came next, including me.
If you got sick in the UK before 2021, you would've been prescribed GET and CBT based on NICE guidelines that were established based on the infamous PACE trial. It took the heroic efforts of Australian ME/CFS patient, Alem Matthees, journalist, David Tuller, and other advocates to obtain the raw PACE data that, when reanalyzed, proved the trial administrators manipulated their results to produce a positive trial outcome. The result was that NICE formally denounced behavioral/deconditioning disease models and stopped recommending GET & CBT. Matthees' condition reportedly worsened significantly over the 3 years of fighting with the UK courts.
If you got sick before 2012, there were few if any philanthropic organizations researching ME/CFS. SolveME existed and did selectively fund some research but was primarily an advocacy organization. ME Research UK existed as well but was quite small and only deployed a couple hundred grand per year. Today (including Long Covid orgs) there is OMF (founded 2012), Bateman Horne Center (2015), PolyBio (2020), We&ME (2020), Schmidt Initiative (2023), CODA (2025), and others. In aggregate, it is likely tens of millions of dollars that these orgs are deploying into disease research each year.
Are we where we want to be? Not even close. But, as corny as it is, there is no point in history in which you would rather be sick than right now. So, thank you to every patient that came before - all us new patients owe you an enormous debt that can only be repaid by continuing to fight for funding, awareness, and research. I am happy and proud to do my part and plan on doing so for as long as it takes.
Wishing everybody better days ahead. On to year 2.
Bert retweeted
Thank you @Bert_with_ME for sharing the power of your own experience with chronic illness and shining a huge light on the urgent need for CODA's research.
In just a few short days, people have been inspired by your personal story and contributed $18K!!
With your family's generous funding of $10K, we are now at $28K and growing!
100% of the funds raised with Bert's campaign will directly fund critical research for patients living with complex multisystem disorders which include Long COVID, ME/CFS, dysautonomia/POTS, and related disorders.
Please join Bert in his fight to bring effective treatments and health to the millions of people who need them!
givebutter.com/CODAFUNDRAISE…
This month marks 1 year of ME/CFS, which I am commemorating with a fundraiser for @CODA_research - we have already reached $18K thanks to the extraordinarily generous support from friends, colleagues, and strangers alike, and me and my family will be contributing an additional $10K. I know many of you have your own advocacy efforts or may not be in a financial position to make a donation, but I urge those who can to please consider supporting this campaign for CODA.
givebutter.com/CODAFUNDRAISE…
I've already written a lot on the fundraiser page linked above, so I will not rehash my story and general musings about this disease, but I do have a few additional thoughts I want to share specifically for the patient community on X.
When I got sick in July 2025, ME/CFS was designated by every major medical authority as a real, biological condition. In the 15+ doctors I visited, I was never told once that my symptoms were psychosomatic nor prescribed GET or CBT. When my friends & family looked up ME/CFS online, they found mountains of research and countless medical professionals offering advice on how to manage the condition with lifestyle interventions and off-label medication. I also found community and hope in the patient and research organizations that already existed.
I understand that my experience has been better than most. I also understand how easy it is to look at the present-day situation with despair - I do it all the time. But I also feel an immense amount of gratitude towards the patients and advocates that have been at this for 5/10/20+ years, fighting for progress even when it seemed to move one inch at a time. Their suffering and activism have made things that much better for everyone who came next, including me.
If you got sick in the UK before 2021, you would've been prescribed GET and CBT based on NICE guidelines that were established based on the infamous PACE trial. It took the heroic efforts of Australian ME/CFS patient, Alem Matthees, journalist, David Tuller, and other advocates to obtain the raw PACE data that, when reanalyzed, proved the trial administrators manipulated their results to produce a positive trial outcome. The result was that NICE formally denounced behavioral/deconditioning disease models and stopped recommending GET & CBT. Matthees' condition reportedly worsened significantly over the 3 years of fighting with the UK courts.
If you got sick before 2012, there were few if any philanthropic organizations researching ME/CFS. SolveME existed and did selectively fund some research but was primarily an advocacy organization. ME Research UK existed as well but was quite small and only deployed a couple hundred grand per year. Today (including Long Covid orgs) there is OMF (founded 2012), Bateman Horne Center (2015), PolyBio (2020), We&ME (2020), Schmidt Initiative (2023), CODA (2025), and others. In aggregate, it is likely tens of millions of dollars that these orgs are deploying into disease research each year.
Are we where we want to be? Not even close. But, as corny as it is, there is no point in history in which you would rather be sick than right now. So, thank you to every patient that came before - all us new patients owe you an enormous debt that can only be repaid by continuing to fight for funding, awareness, and research. I am happy and proud to do my part and plan on doing so for as long as it takes.
Wishing everybody better days ahead. On to year 2.