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The FMT study is potentially interesting but they insist on weird outcome measures. I think an FMT would be easy to blind so why not just use symptoms scores or something? The SGB is also hard to blind because it causes certain side effects. Wust's research on microclots probably won't find...

I'm lucky to have had a different experience with family. They believe me. My mom even reads about ME from biomedical sources.

I can't believe she's letting people get antibiotics over the counter. This is gonna drive resistance. I can't believe she's serious.

Postacute sequelae and adaptive immune responses in people with HIV recovering from SARS-COV-2 infection Open access: https://journals.lww.com/aidsonline/Fulltext/2022/10010/Postacute_sequelae_and_adaptive_immune_responses.1.aspx Abstract: Background: Limited data are available on the long-term...

They're so close though! Using the term ME/CFS, then referring to it as a disease. "All publicity is good publicity." We should be grateful this and advocate for better.

Unfortunately, I can only read the abstract, but if they didn't they really should have looked at whether having doctors or family who believe you're actually sick has an effect. I bet it does.

That's completely at odds with how I describe my condition to others. For example, I was once on the phone with someone at a physical therapy clinic, and I said "I have no physical limitations in the conventional sense..." then described PEM. The way I've seen it described by others is that if...

The also use the Hospital Anxiety and Depression scale to evaluate mental health, which only asks about emotions, not tiredness or autonomic symptoms.

Here's a simple table of what they found between Omicron and Delta. It looks like they're comparing people who get acute Delta vs. Omicron, rather than people who get LC from Delta vs. Omicron, so this considers both the differences in what LC symptoms are most common, as well as the overall...

We really need to figure out the issue here. Nobody will take us seriously if they think 30% of healthy people experience PEM.

That's dramatically different from how ME was presented back in the day. ME: "It's just a condition suffered by a bunch of upper-class housewives" Long Covid: "Anyone can get it, regardless of race or social class, but mostly white and upper-class are coming to see us. All the people who can't...

That sounds like fairly typical investing stuff. Often when a small publicly traded company performs poorly, there will be big fights between "activist" shareholders (those who want to play an active role in how the company is run) and company leadership. Edit: Cort Johnson covers this in more...

You bring up a good point I missed. If we give early access more liberally, drug companies may never bother proving their treatments actually work, which will hold back medicine in the long run. I'm personally uncomfortable with Aduhelm and Relyvrio receiving approval in the way they did. Full...

I'm extremely lucky that my doctor gives me longer appointments. It's a small clinic that's rarely busy. We usually book for 30 minutes and we often go over.

I've heard of some long haulers who get taken seriously by some docs. Medicine is learning. It's just at the pace of a glacier, and it needs to be at the speed of a bullet train. GET and gaslighting are harming people. It's even slow slow that I'm like, "Hello! I'm only gonna live so long! I...

Probably BPS because they use CFS/ME. Nothing useful is likely to come out of this. I wish we could get some decent psychosocial research but this won't be it.

This article discusses the issues surrounding allowing patients with horrific prognoses to take unproven, or weakly proven, drugs. It makes me think we need to move from a black-and-white system where a drug is either approved or not to something more complex. For example, one tier for solidly...

As I read this paper, I kept going back and forth. Is this the good or bad type of psychosocial research? I concluded it leans towards bad, because it neglects to say flat-out that long Covid is a real illness. I don't know if this is because the researchers just aren't focusing on that, or...

May not be relevant to ME but that's pretty cool. If this gets developed, I can't wait to see what they discover.

I'm sure psychiatry could make medicine better, if you pointed it in the right directions, and researched with high standards. But as someone else quipped, people like Simon Wessely aren't going to take us there.