Tim
1.2K posts
Tim
@TimofejM77894
ME/CFS triggered by mild COVID
In my bed Katılım Nisan 2023
1.1K Takip Edilen549 Takipçiler
Back to something positive. My rituximab infusion went well a couple weeks ago. I used to get really bad infusion reactions but turns out it was because the doctor didn’t use steroids. Paresthesia has already improved since then.
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If you were a participant in the Vyvgart trial, please email Mackenzie at coreresearch@mountsinai.org to get a free at-home lab kit.
Mt. Sinai & Yale are testing against a newly discovered autoimmune biomarker, with the goal of initiating a new FCRN inhibitor trial by year-end!
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@TimofejM77894 Yes! I am currently following up on this work to evaluate by which autoantibody is the one causing the disease and through which mechanism is it happening
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Excited to share our study in Cell!
Using passive transfer experiments, we found that autoantibodies from Long COVID patients can induce neurological and pain-related phenotypes in mice, supporting a causal role in disease.
cell.com/cell/abstract/…
#LongCOVID #Autoimmunity
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@SalvMattera Chekhov suffered from TB. With today’s 4–6‑drug treatment regimens, he probably wouldn’t say this.
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"If many remedies are prescribed for an illness, you may be certain that the illness has no cure." -Anton Chekhov, writer and physician
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i am really sad about this and very grateful for all fidji has done for openai, and even grateful for her friendship and who she is as a person.
we all wish her the best for a speedy recovery. this sucks.
Fidji Simo@fidjissimo
Today, I shared with the OpenAI team that I have decided to leave my full-time role at OpenAI and transition to being a part-time advisor. Three months ago, I had to go on medical leave after a severe exacerbation of a chronic illness I’ve lived with for seven years. During that time, it became clear that the road to recovery would be much longer and more complex than I had anticipated—and that I needed to focus on it fully. When I went on leave, many people told me I was courageous for prioritizing my health. The truth is that I am only making this decision now because I failed to make it many times before. Over the years, doctors, friends, colleagues, and loved ones encouraged me to slow down. Two years after I got sick, Facebook offered me the opportunity to take a full year of medical leave. I didn’t even pause to consider it. I immediately said no. At the time, Zuck told me I should play the long game. I wish I had listened. Looking back, I realize that a lot of what made me successful also made this decision incredibly difficult. I grew up believing that opportunities were precious and that when they appeared, you grabbed them with both hands. That mindset carried me from a small town in southern France to opportunities I never could have imagined. By the time I turned 40, I had already gotten to do more than I’d ever dreamed possible as a kid growing up in Sète. I love building. My work has always given me a deep sense of purpose. OpenAI in particular felt like a role that my entire career had been building toward, which made this decision even harder. But what I’m learning now is that grit and endurance are not the only skills required to have impact over decades. Sometimes the harder thing is to stop, listen, and trust that taking care of yourself today makes it possible to contribute for much longer tomorrow. This experience has also strengthened my conviction about why this work matters. It has been a jarring experience to spend my days helping build the future while simultaneously navigating a disabling disease that still has no cure. Over the last seven years, I’ve spent countless hours in doctors’ offices, dealing with symptoms, treatments, insurance, uncertainty, and all the invisible work that comes with being a patient. Like millions of others living with chronic illness, I’ve experienced firsthand how difficult healthcare can be to navigate, even when you have every possible advantage. More than ever, I believe that some of the most important opportunities for AI lie in helping people solve real problems in their daily lives: their health, their finances, their time and the everyday burdens that shape human experience. In particular, curing disease is the most important thing AI could accomplish. I’m excited to continue working towards cures through OpenAI but also through my work with @ChronicleBioAI and @CODA_research. I’m deeply grateful to @sama, @gdb and the OpenAI board for their support during this time and for offering a way for me to continue contributing to the mission without sacrificing my chances of recovery. I’m also so thankful to my team and the many extraordinary colleagues I’ve had the privilege to build alongside. For now, my focus is recovery. But my belief in the potential of technology to solve deeply human problems has never been stronger.
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@atranscendedman Thank you for posting articles every day. It makes scrolling less brain rotting for me.
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Columbia University, 116 people with ME/CFS
Worse gut symptoms tracked with fatigue, brain fog, pain, and flu like illness
Higher gut symptom burden also linked to higher CRP, suggesting gut immune changes may help drive illness in a subset of patients
link.springer.com/article/10.118…
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Officially got my number! I will be patient #4️⃣5️⃣ in the Edogawa McCairn clinical treatment trial for long COVID and vaccine injury…counting down the days…if you can help by donating or sharing it will allow me to get as much treatment as I need…thank you! 🙏💖
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@ImmunoFever I haven’t seen any evidence that microclots cause symptoms of LC or ME/CFS. False‑positive and transient Aabs will only cause even more confusion and stress for desperate and impoverished patients. Aabs ≠ a disease.APS should be considered in the appropriate clinical context.
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How is it possible that people with symptoms of blood clots or microclots haven't been tested for anti-phospholipid syndrome??? Primary care docs not running anti-cardiolipin IgM and IgG? It's one thing when there aren't tests, but this test has been around 4 decades.
Michal Tal, PhD@ImmunoFever
For those of you with ME/CFS, chronic Lyme, long COVID or other complex neuroimmune how many of you have had your anti-cardiolipin antibodies (IgM or IgG) measured (would be part of the anti-phospholipid syndrome panel) and also tried ss31 (thought to be cardiolipin protective)?
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@DrRebeccaRyan I think the problem here is that safety of long-term 10 g of salt intake has not been established as well as its efficacy for both POTS and ME/CFS.
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Fludrocortisone works by reabsorbing excess salt and thereby water from the urine.
If there is no salt or not enough salt in the urine then it can’t work.
(Yet I see so many pts in fludro and not salt loading. Makes me want to pull my hair out)
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POTS - Salt and water
Whenever I diagnose a pt with POTS, I explain how POTS affects their body (but in particular their gut). I then show how this leads to the development of symptoms. And how to treat.
For every disease we should always discuss treatments
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@scott_scientist 'Using advanced techniques, researchers will evaluate whether specific environmental exposures are associated with biological changes linked to ME/CFS'.
I'm curious what are these 'biological changes linked to ME/CFS'
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Highlights from the new NIH grant announcement for mold research in ME/CFS:
"The complex chronic illness affects multiple body systems"
"ME/CFS is a systemic disease"
"symptoms begin after exposure to viruses or other environmental factors, but we still don’t fully understand what causes the disease to start"
"some ME/CFS patients report symptom onset following exposure to mold-contaminated environments"
"Understanding how environmental factors influence disease development could help identify biomarkers; improve diagnosis; and, ultimately, lead to more targeted treatments.”
UMMM, when did researchers suddenly get it??
Hats off to her, she said it perfectly 👏
globenewswire.com/news-release/2…
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@calirunnerdoc Better ask @Neuro_Matt, but normative values of IENFD have limited reliability, and sensory nerves have nothing to do with vessels. Also, there is no standardized procedure for assessing vasomotor fibers.
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@calirunnerdoc POTS criteria have never been properly validated. Evidence that SFN is a cause of POTS is barely present. Novak’s transcranial Doppler is not reliable. Questionnaires are not reliable. 🧵
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The reason biological therapies like IVIG remain stubbornly "off-label" and nearly impossible to get approved by US insurance for Long Covid is the direct result of six years wasted on superficial symptom surveys and mind-body interventions.
This is the handiwork of self-appointed "experts" who eagerly conflated distinct pathologies for nothing new symptom syndromes just to boost their own academic careers and capture funding.
Because these figures and massive initiatives like RECOVER have failed to publish the definitive, hard clinical outcomes that insurance algorithms and regulatory bodies require for coverage, patients are left paying the price.
Until the research pivots from soft behavioral surveys to indisputable biological endpoints, patients will continue to be starved of life-altering therapies- not because the science isn't there, but because the establishment chose to fund academic careerism instead of cures.
Patients need to be aware of this and demand change. 💕
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@calirunnerdoc What you are proposing is similar to the RECOVER Autonomic trial. I guess Peter Novak is advising on it. Such a design is problematic anyway, and I don't have high expectations.
trials.recovercovid.org/autonomic-grou…
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Inclusion for example: SFN on skin biopsy + autonomic dysfunction + post-infectious trigger (COVID). Outcomes: small fiber density, autonomic parameters, SFN symptoms? Similar to Novak et al. retrospective study(below). RECOVER trial to my knowledge only looking at POTS (where IVIG RCT already failed), may exclude SFN patients who may benefit. Disclaimer: I am not a neurologist. pubmed.ncbi.nlm.nih.gov/41422333/
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@calirunnerdoc What would be your well designed trial of IVIg? For example, inclusion criteria and outcomes?
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@TimofejM77894 If there are no well designed trials, despite a therapeutic being in use for 6 years for a purpose, there likely won’t be FDA approval. We have to ask ourselves why there haven’t been robust trials. We have to look at why trials have failed. Does a negative trial = not useful?
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A visit to a ME/CFS/PASC clinic these days is like seeing a doctor in the 19th century. You hear a bunch of unevidenced anecdotes about broken mitochondria, lingering viruses, and inflammation, and you get a prescription for low-dose something.
reddit.com/r/cfs/comments…
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@surf4children There's no real evidence to think that these meds help. They're just anecdotes circulating on social media and 'guides' from private physicians. Visiting Italy may probably outperform these meds. Highly recommend to those who don't have PEM.
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@TimofejM77894 nothing new, only ivig, rapamycine, low dose anticoagulants, LDA, LDN
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these are the users using my virtual clinic.
and I understand them, as the reports I am seeing are literally impressive.
Considering that 99% of patients have no access to research centers, specialized centers nor trials, this is going to be the best first step you can have.
…o-clinic.thekookbitcoiner.workers.dev
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