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Yeah. One flaw in this otherwise encouraging paper. They're discussing long Covid research in the context of the Human Genome Project and the enormous progress in managing HIV. The implication is obvious--that we should pursue a treatment for LC just as fervently.

Have they tried yoga?

Haven't looked closely at these reports in a long time. The most worrying figures are that 1.1 million people have suffered from long Covid for at least a year, and that 1.6 million have some disability, and 342,000 whose activities are "limited a lot." There's a lot of people who are disabled...

This is similar to ME research, where there are some signs of immune dysregulation, as if the immune system is activated in some ways and "exhausted" in others, but research is too preliminary to piece everything together.

When I said unambiguous, I meant that the clinical entity ME/CFS has a single correct code. Not that related problems would be immediately be fixed. You bring up a good point about older patients though. These people have R53.82 in their charts and it may not be changed for years or ever. This...

Oh my gosh. I've observed that your posts often express a cynical view of medicine...now I know why. I got diagnosed within 8-9 months of discovering ME (though I was sick for years previously), and the professionals I see regularly are on my side (my physician, sleep doctor, and counselor all...

Yes. This how I imagine the progress of research into post-infectious conditions: "You need to stop collecting welfare and go back to work. Nothing's medically wrong with you" "Your symptoms are real but due to deconditioning. Gentle exercise might help." "If you have PEM, be very careful about...

You stopped?

My experience with ME was even more extreme. It took me 3 years, 9 months to be diagnosed, and I missed out on over $70,000 in disability benefits. Fortunately, I applied for disability for autism in 2018, but was denied and never appealed. When I applied again in 2021, they determined their...

Oh, for sure. I stand by my original comment--I'm very proud the NIH and CDC speak of ME/CFS as a serious problem. But there's not enough action. They're consulting experts in post-viral syndromes in the RECOVER trial, publishing good material about ME, and funding some research. That's good...

I know the stereotype that fit, athletic, or tough people don't get long Covid, but self-employment is a new one. (I guess the idea is that self-employed people are hard workers.) I find it kinda funny because I was self-employed when I got ME. Sure, it was a side business, but it checks the box.

Yikes!

My PEM may have changed too, but it's hard to say if it's a difference in what symptoms I had, or a difference in what I noticed. But in the first few months of my illness, it was odd neuro symptoms. My mind was "jittery" or "glitching". It sort of felt like I was trying to think, but I was...

I mean, hey, if you don't have PEM, knock yourself out. But I doubt it will be curative. Lifestyle changes like exercise tend to be about managing, not curing, a chronic illness. Disappointingly, this paper doesn't explicitly say PEM is a contraindication for exercise. But they're at least...

I'm very proud of my government talking very seriously about ME/CFS and long Covid.

This paper is full of solid recommendations. One thing that stood out to me was their recommendation that there should be 2-4 ME specialists per 1 million population. This sounds low, but that would be equivalent to 660-1320 ME specialists in America or 134-268 in the UK. There would be at least...

It's not at all wrong for Dr. Komaroff to refer to the connections between ME and LC as "emerging." It's a condition that's less than three years old. That's an eternity for people who are suffering, but not long for science. LC is far newer than most other diseases, which are probably as old as...

What's the deal with Denmark? It's really a shame that they're so stubborn about ME being a real illness. Heck, even the UK seems better. At least in theory, they have solid guidelines. The CDC's website straight out says ME/CFS is a biological condition. But Denmark is really stuck with all...

The use of sedentary controls is a big deal. They're at least trying to eliminate the potential effect of activity level. While the average sedentary control will be less active that the average pwME, it's still a step towards rigorousness.

That's good to know. I didn't know because I don't get lymph node swelling or tenderness as an ME symptom. I have experienced sore lymph nodes at times, but only when a healthy person likely would as well. For example, if I get a cut in my mouth (presumably my immune system is reacting to the...