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Even sleep doesn't help!

Berlin Cures has hired a new CEO: Berlin Cures Welcomes Oliver von Stein as New CEO to Lead Next Phase of Innovation and Growth. https://www.berlincures.com/en/news/new-ceo

The body is weirdly simultaneously resilient and pathetic. Get in a car crash and break a bunch of bones? You might survive. Blood decides to clot somewhere in your heart or brain? Oops. Medicine is much the same way. People live to 90 because we can treat infections, heart disease, diabetes...

When I saw this, I was worried it would be a psychosomatic study making some disgusting claim like, "People with ME think they have long Covid because they're constantly worried about their health and think they're sick" but I was pleasantly surprised. This study hits on all the major aspects...

I found reading this paper very comforting. Knowing other people who experienced similar illness had many of the same thoughts and feelings. It's extremely difficult, emotionally, to live with severe illness, especially others don't view your illness as legitimate. I personally feel a profound...

This is looking good, I hope it will teach us something. I also wonder if the mechanism of sensory issues in pwME is similar to autism.

Well, those graphs are pretty scary. The number of pwLC with no activity limitations peaked and is going down, while the number with severe limitations has leveled out or it still increasing.

Was it stopped because it was ineffective?

When I got my wisdom teeth removed, they gave me a bunch of codeine/acetaminophen (aka paracetamol) pills. Maybe a week's worth? And I never needed any, ibuprofen was enough.

Why would you do a study like this with no mention of PEM?!

I think the ICC is unnecessarily strict. The most important symptom of ME is, by far, PEM. Requiring as many other symptoms as the ICC needlessly weeds people out, probably biasing samples towards more severe or complex presentations.

When I saw the breakdown by severity, I suspected they did it after analyzing the results. If they compared all pwME vs controls, and got no significant result, then stratified patients by severity to get something, this paper is just a useless fishing expedition.

The numbers from the article: At 6 months, 22.9% had symptoms At 1 year, 18.5% had symptoms. Thus 81% of the people who were sick at 6 months, remained sick at 1 year. At 2 years, 17.2% had symptoms. Thus 75% of those sick at 6 months remained sick. This assumes the rate of onset after 6 months...

I don't see how this paper is so groundbreaking. It's a mishmash of different measurements that are claimed to be causally connected, but not by any means proven. Closer to an initial hypothesis than proving anything.

That's interesting. I would consider trying it if it was an option. I do have emotional difficulties, but I'd say they're more similar to "end-of-life psychological distress in advanced-stage cancer patients" than depression. Not that I'm dying, but ME is a similar position of severe incurable...

I'd love to see an American GWAS to replicate DecodeME. I've heard rumors that the NIH is considering a genetics study.

Wow, kudos to her. I hope she has a great career in science.

It's written by someone who experienced PEM and repeats what patients and knowledgeable doctors say about pacing. The only muddled part was when she said that you're expected to be able to increase your energy envelope when you're pacing. Some people can do more if they pace, but not everyone.

And then girls will have more "unexplained" symptoms, because no one bothered to investigate, and they will experience more distress over them, because they don't know if their symptoms are merely annoying or a sign of something life-threatening like cancer.

The introduction to the article is sensical. It's reasonable that LC is correlated with mental health problems, since poor mental health can affect your ability to care for yourself, immune function, and so on. In the proper sense, that's psychosomatic, but researcher, Andrea Roberts, was in the...