Biotech Digest

I've been sick with ME/CFS & related comorbidities for 20 years and noticed it's really hard to find any reliable info on treatment beyond pacing recommendations So I built a treatment database for our community, covering ME, LC, POTS, MCAS, FM, SFN thespooniverse.org/treatments

@michelle_gibby Much appreciated! 💜

@biotechdigest This is amazing! Thanks for sharing, and your efforts in creating it!

I've been sick with ME/CFS & related comorbidities for 20 years and noticed it's really hard to find any reliable info on treatment beyond pacing recommendations So I built a treatment database for our community, covering ME, LC, POTS, MCAS, FM, SFN thespooniverse.org/treatments

@liamsLCjourney Most of my issues started from prescription drug poisoning, so I think the terminology applies

It's funny how we all say that malaise feels like being "poisoned", but none of us have ever been poisoned. (unless you 𝘩𝘢𝘷𝘦 been poisoned, in which case, reply and tell us what it felt like!)

Our paper is (finally) out in @CellRepMed: antibodies from #LongCOVID patients transfer symptoms to mice, pointing to a potential causal role for autoimmunity: cell.com/cell-reports-m… @amsterdamumc @UMCUtrecht 1/12

@BiologistBunk @yulingchow Congrats Thomas! Amazing work!

@biotechdigest @yulingchow Pleased to share our positive #LongCOVID trial results. A patient-friendly, low burden, all remote trial. The top half of participants saw a mean 81% decrease in their Long Covid symptom burden over 10 weeks. doi.org/10.1038/s41598…

@liamsLCjourney The heterogeneity is real. Trying to compile the available evidence for different interventions here: thespooniverse.org/treatments

Every time I talk to someone new, I ask them what their top few treatments have been. Not only are the answers completely different for every person, without fail, at least one will be something I've never even heard of that's not on anyone's radar! That's why it grinds my gears when I hear people say there are "no treatments" for ME. There are 1000+ treatments for ME. Somewhere out there are at least 3-5 you haven't found yet that will treat your symptoms, possibly reverse your disease state, and maybe even put you in remission! The key is finding the right ones to try, in priority order, while avoiding the ones that make you worse. I'm not denying that it is difficult. But this, I'm increasingly convinced, is the roadmap to recovery.

I spent about 200 hours over the last two months building an RNA pipeline to analyze my own long covid blood RNA sample. This post talks about my efforts and the end result. While I plan to open source some of this at some point, until I get more data, I'm unable to refine it enough to release it so it can eventually be used by researchers. But thanks to some new relationships with a few labs I've recently established, one of which is pretty enthusiastic, I should be able solve that problem soon. So here is a summary of some of my efforts for creating my own RNA pipeline to help further #longcovid research, along with what it showed for my own blood sample. duanestorey.com/posts/chimera-…

@whitebearvt Thanks so much, fingers crossed!

@biotechdigest saw your post on reddit yesterday, will say it again here, super awesome project, and one I think will be very helpful to many in the future.

@DiamonDie Thanks for sharing, I'll take a look!

@biotechdigest Oh, have you read my book which lists over 250 treatments. :) amazon.com/Reviving-Broke…

What an incredible resource! Thank you for the treatment database @biotechdigest #MECFS #MyalgicEncephalomyelitis #pwME #LongCovid

@parmita n. a chronically online founder overconfident that she can cure cancer

@biotechdigest Still waiting for the naïveté :)

I just asked myself the most important question I’ve ever asked. What if, god forbid, I had cancer right now? How would I save my life and would I be able to do it without Precigenetics? The answer made me cry. Here’s EXACTLY how I would save my own life TODAY. 🧵

@parmita Interesting that when I offer you concrete help, you ignore it. Only when I have a critique do you respond. You claim to seek collaboration, but you just want engagement.

@biotechdigest Sorry but that’s not specific enough at all. Please Come to me with specific concerns with our build. Thanks!

@parmita Yes, and it describes an ideal world that doesn't exist. You claim this is what you would do today.

@biotechdigest you did not answer. did you read the whole post or not

@parmita That makes two of us. I still think your optimism outpaces the reality.

@biotechdigest bro I work on cancer for a living I know Did u even read my post?

@parmita Despite sharing hallmarks, cancers are not all identical

@biotechdigest what thousands of problems? a cancer is a cancer. read up on all the biologists who legitimately saved themselves from theirs!

March is Colorectal Cancer Awareness Month. As a GI oncologist, there’s something I wish everyone understood: Many of the patients I see with colon cancer never thought they were at risk. Some are in their 40s. Some even younger. Here’s what everyone should know 👇

@parmita The idea that one novel lab, however promising, could be the answer to thousands of unique problems

@biotechdigest what’s naive? the idea that I could get cancer? or that if I do I would use my lab to try to save myself? what is naive?

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells

@lovemoz1 @liamsLCjourney Sampling longitudinally can give you more insight than any one test in isolation. Microbiome composition fluctuates a lot over the course of 24 hours. Multiple tests can give you a better picture of the community.

@biotechdigest @liamsLCjourney Can you recommend best methods/product for testing?

Who's ready for 🎵 gut monnnnthhhh? 🎶 I got my first ever Biomesight microbiome test results and here's what I found: 1. Bifidobacterium basically gone (0.028% - should be 2-5%). From what I heard this is extremely common in LC/ME, major driver of inflammation and immune dysfunction 2. Akkermansia critically low (0.067% - should be 1-3%). Responsible for maintaining gut mucosal barrier 3. Bilophila wadsworthia elevated (0.4%) - produces hydrogen sulfide which directly inhibits mitochondrial function 4. Substantial proteobacteria bloom - consistently elevated in ME cohorts and produces LPS endotoxin that drives neuroinflammation 5. Ruminococcus dominating at 10% of my microbiome - no genus should be this dominant, and the specific species R. gnavus degrades gut barrier and keeps showing up in LC research as a problem taxon What I'm going to do about it: Seed DS-01 - amazon.com/dp/B0CMJR4XGR. Contains like 22 bifido strains - 53.6 billion AFU total, built-in prebiotic and pomegranate extract which will help Akkermansia. Pendulum Metabolic Daily - a.co/d/081U15Bk. Contains Akkermansia muciniphila, Bifidobacterium infants, and more - targeting Akkermansia dysfunction with some Bifido. HealthAid GOSPrebio capsules - amazon.com/dp/B07CJLYR82. Selectively feeds Bifidobacterium and helps the probiotics actually establish rather than just transit through. Bismuth subsalicylate - taking 2 tabs twice daily for 2 weeks. directly suppresses H2S-producing bacteria including Bilophila which I have too much of. The bilophilia and ruminococcus should self-correct as the beneficial bacteria restore and crowd out the problem taxa over 60-90 days... at least that's the theory. As the meme goes, I HAVE NO IDEA WHAT I'M DOING so feel free to correct me on any of this.