Lobe Life

@VirusesImmunity @NatRevImmunol 4. I say this as a scientist, I wish all scientists could strive to be more like you. You are actively asking questions and seeking data not peer approval. You are a star in the scientific community.

I wrote this piece to promote thoughtful, respectful, and rational engagement with controversial science topics. I hope it fosters constructive dialogue in the scientific community—thank you for reading and sharing 🙏🏼 @NatRevImmunol nature.com/articles/s4157…

@VirusesImmunity @NatRevImmunol 3. negative or positive. However, the public often becomes far more overzealous with negative results than the data furnishes. Then science advocates push back ignoring negative possibilities. It then becomes a vicious cycle instead of science.

@VirusesImmunity @NatRevImmunol 2. permutations possible are unfathomable. To say a treatment will work one way for each individual is easy, but incorrect. This is similar to academic journals not publishing negative results. In science, many want to ignore the negative results. The data doesn't care if it's

@VirusesImmunity @NatRevImmunol Dr. Iwasaki, 1. What you have done here is incredibly brave. You are taking the bias out of science, that's highly commendable. As a scientist, I realized everything in science isn't black and white. We have 6.2 billion base pairs per diploid cell. The combinations and

@CoffeeBlackMD @dysclinic 2. The term "looseiest" is not a word. The word is "loosest". You failed to use a comma before ‘and’ when it connects two independent clauses multiple times. The use of experience should be the plural form "experiences". You missed multiple commas in the last sentence as well.

@dysclinic Try re-reading the post again. But this time use reading comprehension skills. If you have any.

The overlap in “long covid” and significant hypochondriac mental illness is very real. And you all know this based in the people you personal know with long covid. It’s like a personality trait. Always a victim. And boom. They get the Lon’vid too? What are those miserable chances? The odds that someone so screwed by everyone already also now had the Lon’vid. They already have constant pain. Chronic fatigue and there isn’t anything they can eat that won’t kill them via allergy or give them the looseiest of stools. Everything often neatly and meticulously recorded in a stack of notebooks that you can review. These people don’t have anything real going on other than a psychiatric disorder and this is why nothing works for them. And then there are the real cases. Which are also difficult with very little evidence that anything benefits (though every weird drug has been tossed at it). I think it’s often a relative mitochondrial dysfunction and will get better over time but is best fixed by exercise and sleep. I’ve read some promising experience with SS-31 and MOTS-c. And these people tend to be motivated to actually get better. The thing is to try to find a real case you have to wade through so much mentally ill bullsh*t brought by those that glom onto the diagnosis but don’t have it and they are exhausting.

@CoffeeBlackMD @dysclinic 1. You state this while having a poor grasp of the english language. Starting a sentence with "and" is improper. Using the adjective "personal" instead of the adverb "personally" in the second sentence is wrong. Using the adverb "always" to start a sentence is improper.

@longhauling55 @dysclinic I had individual complement proteins tested. I am a biologist by trade so I looked at each one I suspected. There are three complement pathways. You can test 2 pathways with AH50 or CH50 for more general tests. The Lectin pathway cannot be tested like that. You can try MBL level

@LobeLifeCo @dysclinic Which test did you do for this? Thanks

I see many patients with #LongCOVID who have elevated complement levels. When I ask my rheumatology colleagues about this finding, they tell me it's "non-specific" because only low, not high, levels matter as markers of autoimmune disorders. The research findings explained by @VirusesImmunity fit nicely with my clinical observations.

@Fictionalmuse1 2. individual complement levels. MBL doesn't have a high range in practice only ranges found in academic literature. So I know but how useful is it. The test is MBL level. Generally it is checking for people with low levels not high. But high complement proteins can cause damage.

@LobeLifeCo May I ask how you tested for this? Which specialist(s) do I need? 😂

@Fictionalmuse1 1. I'm a biologist by trade so I do a lot of research into my disease. I was positive complement was involved in some manner. So I talked my GP into testing it. He is okay with random tests. There is a lot of tests they can order. A lot more than you think. We tested a bunch of

@dysclinic @Preprints_org Fantastic job. Finally research talking about advanced immunotherapies that haven't been widely tried yet. This is what we need

Finally, after months of trying different journals, my paper on immunotherapies in #POTS and #LongCovid has been accepted for publication in a peer-reviewed journal! Despite trending and being number one in #Neurology and #Neuroscience on @Preprints_org, it was not easy to publish it for numerous reasons, not the least of which is the fact that the topic is new and still evolving... I will share the final paper here once it's published, but I already want to congratulate my amazing @Jacobs_Med_UB med students co-authors - all future neurologists - who put in a lot of great work in writing, researching and preparing tables for this innovative and thorough review!

@DanMissailidis @ArsenBalls Thank you Daniel

@ArsenBalls This is why I work my bum off. I know that every day more is too long. We’ll get there.

I’m literally crying.

@TomKindlon This is awesome. Thank you for posting this. I've been waiting so long for this study

Exciting! DecodeME: "the initial DNA results from the DecodeME study will be available in the next few days" decodeme.org.uk #MEcfs #PwME

@hoolie_r Personally, I was physically attacked multiple times for wearing a mask. I am 6'3" and 210lbs and this still happened. I also had a lot of emotional attack as well for wearing one. I mostly don't go out anymore but I don't wear a mask anymore when I do. It sucks

long covid for 5 years and my son too.” She went on to talk about the problems finding care and lack of knowledge in healthcare about pots and the research about it being autoimmune, her struggles with LC, etc etc. Guess who wasn’t wearing a mask?

My anesthesiologist for my surgery today walked in and was like “ooh, do you have a cold?” And I was like “no, just trying to stay safe from anything.” And she asked if I was immunocompromised and I was like “I got pots from covid so-“ and she goes “oh I have pots too! I had

@BCarfree @polybioRF Anyone who has had LC previously and recovered shouldn't apply. They are looking for healthy controls. The controls allow researchers to see the differences in healthy tissue vs. those with LC or those predisposed to it.

@polybioRF Is there any information on the air hygiene at the facility? It would be horrific for someone to have fully recovered to be cast down into Long Covid Land while doing something to help study the disease.

The NIH is seeking 6 healthy controls to participate in this tissue biopsy study. It will help determine the role of SARS-CoV-2 viral reservoirs in Long Covid via extensive tissue sample testing. If you know someone with Long Covid, consider contributing to this crucial research.

@MVGutierrezMD Post it on the reddit group called "covidlonghaulers". It's a group of 70k people with LC and it's quite active. There are many medical professionals there with LC.

I could use some help spreading the word about a PhD dissertation project. If you know of a healthcare worker or support staff worker(e.g. EVS or maintenance) who may be experiencing Long COVID symptoms, please pass along link to the survey below. Thanks! twu.qualtrics.com/jfe/form/SV_40…

@oldfshndanne That's not what this is saying at all. Pregnancy completely changes the immune system and inflammatory profile in the body. They studied health records to see the effects. This could help narrow the down causes of LC. It's not suggesting people get pregnant to prevent LC

Um... WHAT??!! Is there a whole new batch of propaganda out about covid being GOOD for expectant mothers, or am I hallucinating??? contemporaryobgyn.net/view/study-fin…

@RemediesPodcast @McAlpineLabYale There is a zoom option as well...

@McAlpineLabYale No mention of patient safety for the 'in person' presentation? Honest question: How do you explain your contradiction between what you know and what you do?

Join us at Yale School of Medicine for a public forum on Long COVID next week! Thursday, May 15th at 10:30am

@resiapretorius @SemThrombHemost @DavidJoffe64 @SalamonSMD @DrGrahamLJ @doctorasadkhan @dbkell @ArneauxK @PutrinoLab Each of these distinguished scientists deserve it. Thank you all so much for your hard work! Each of you are indispensable to this world

We are so excited that our paper received a most popular paper award. Thank you! @SemThrombHemost @DavidJoffe64 @SalamonSMD @DrGrahamLJ @doctorasadkhan @dbkell @ArneauxK @PutrinoLab

@resiapretorius @AndrewEwing11 @TheWHN Thank you for all your continued work with LC and ME/CFS. We all really appreciate what you are doing so much

On 10 April, I will be at to University of Gothenburg. @AndrewEwing11 (also the chair of the @TheWHN) invited me to present s seminar on our research endeavours.

I am excited to travel to Amsterdam next week to visit @DrDenDunnen and @RobWust for joint projects. I will also be in Groningen for the ID-DarkMatter-NCD & ME/CFS Lines Joint Consortium Meeting. With the theme “Unraveling Post-Infectious Immune-Related Disorders.