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That's why I don't try hard to find a treatment for ME. Trying to get anything treated is exhausting.

I think it's a combination of reduced life expectancy, older generations being less likely to receive a diagnosis, and perhaps older people no longer feeling like they have ME if the effects of old age "shadow" it. It's sensible that we have a reduced life expectancy due to the inability to be...

It's clear that recovery from ME/CFS is rare. The most common course seems to be onset between ages 10 and 40, lifelong illness, then death not directly related to ME.

Surveys have their flaws. Sometimes people answer incorrectly. But I guess every way of getting this data has flaws. This estimate is on the high side. 330M Americans x 75% adults x 1.3% ME prevalence is 3.22M adults with ME. The IOM report estimated 835k to 2.5M.

I wish they'd stop making up funny names and call it what it is. The Mestinon/LDN trial.

I will be very happy if results are published by the end of 2024. I expect positive results, they studied around 20,000 people after all.

It would be an interesting rebuttal because the results are meaningful, but the interpretation for why doctors rate patients' health better is terrible.

We need a rebuttal of this article done by someone like Leonard Jason. They would get similar findings--that doctors rate LC patients' health much better than the patients themselves. But they would explain it as due to doctors' ignorance.

Berlin Cures takes next step in battle against Long COVID Collaboration with Uniklinikum Erlangen as 5th German research center Berlin, Germany, 10 October 2023 It sounds like they're going to open an additional clinical trial site in Erlangen, in addition to the ones they already have (or...

The part I care about is when it'll be published. He says it might come out in Q4 2024. Which is a long way away.

This discussion inspired me to create another thread: What is a proper DALY weight for ME/CFS?

Inspired by our thread on A proposal for further developing fatigue-related post COVID-19 health states for burden of disease studies 2023 Wyper et al A DALY weight is used to calculated years lost to disability from a disease. It's an estimate of your percentage of health with a certain...

I'm pretty skeptical. I don't have any known ongoing infections. I even tested negative for EBV.

The discussion around health anxiety is not inclusive because it fails to discuss the experiences of people who have actual health problems. I have experienced two forms of anxiety around my health: Fear that I do not have a legitimate health problem. Fear that any sporadic symptoms is a...

It's definitely a country-by-country thing. In the US, billboards are common along freeways (motorways) and major roads.

The CDC recognizing PAISes as a group is a definitive sign that BPS ideology is continuing its slow, inexorable slide into irrelevance. Edit: Also, I'm very thankful for this.

If it's only effective if you believe in it, that's not science, that's religion. Not that I hate religion. But it doesn't belong in a scientific paper!

That's even better, thank you.

Do they accept donations from the US? I would like to put this in my advance directive in case I die unexpectedly.

Smells of "You're a woman, so your symptoms aren't that bad, just deal with it"