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Thank you for getting this message out. Biomedical research is what we truly need.

I think this is good news. I was very annoyed when I heard that nanoneedle wasn't going anywhere because of funding. Now let's see if this is for real.

Long COVID research goes private https://www.npr.org/2024/02/06/1229602764/long-covid-research-goes-private NPR segment discussing how there's an increasing amount of privately funded LC research. They talk to Amy Proal and others.

This is further discussed on Reddit, including a complete translation of the interview: BC007 Interview on trial progress

That's ridiculous. PwME should be allowed to decide what treatments they want. If it works but renders people infertile I would take it. I don't care because I never want children.

I've never thought a defect in energy production was the main cause of ME/CFS. I think energy production is impaired because the cells are shifting into a "defensive" state for some reason. Perhaps immune signals.

That's also completely and utterly false, it's misinformation pushed by the CDC in the early stages of the pandemic. Let's first look at a few terms: Source control: Preventing an infected person from spreading to others. Infection control: Preventing the wearer from getting infected. Good...

I hastily found this paper which discusses how particulate filters work: An overview of filtration efficiency through the masks: Mechanisms of the aerosols penetration. They're not like screens that only catch particles smaller than the screen. They trap larger particles by screening them, but...

Completely false. N95s filter small particles effectively. They are rammed into the filter material by Brownian motion.

Transcript: Chris Cuomo: I started this Substack at thechriscuomoproject.substack.com because we need communities on Long Covid were people can trade information about symptoms and what they're doing and if anything is working. Nearly 20 million Americans may have this, and I say may...

If I'm immunocompromised, how often can I get the Covid shot in the USA? And how to get it in practice? I would like to get it more often than yearly like healthy people do. I'm going to tell them I'm immunocompromised because I have ME. (I'm not here to argue about the veracity of that...

Can someone please figure out if this estimate includes vaccine effectiveness? E.g., are they comparing the LC rate among people infected, or the LC rate among all people?

I only notice that if I go way past my PEM threshold, I'll be immediately tired but it shifts into full-blown crippling PEM, but if I go just over my threshold, I will feel ordinary tired, recover, but then experience PEM later.

I also have differences between physical and mental PEM. Physical PEM tends to hit 3-12 hours after activity, the more intense it was, the shorter the delay. The fatigue is different for ordinary tiredness, which I experience too. When I have PEM I'm so tired it's almost like I've been tied...

These authors are well-informed on ME/CFS. My translations are rough around the edges but give a good feel for the authors' views. I included the first few words from the original-language text to facilitate looking it up. They're well aware ME/CFS is often poorly understood: PEM is the main...

I think you're getting at the core of my problem because I don't know if the solution is a lawyer or a doctor. Or a lawyer telling me what to say to a doctor. I don't think it would hurt to give my lawyer a call.

Title. Jurisdiction is Pennsylvania, USA. Because I have very poor quality of life, I want to make sure I'm never resuscitated or intubated, no matter what. I got an advance directive that requests DNR/DNI/comfort care only, which should work in healthcare facilities. (Getting a DNR is wholly...

Long-term follow-up: I put the following in my advance directive:

I am taking Truvada for its intended usage to prevent HIV. I'm taking it as 2-1-1 PrEP, which fits with my lifestyle and should minimize side effects. I did a dry run when I got it, taking it for 3 days as explained, and it had no apparent affect on my ME symptoms. It caused mild, sporadic side...

It's disappointing that he only advocates for us after he retires. Maybe he's no longer pressured by his colleagues or has more time to ponder things.