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I also read the whole paper. It's a thorough, well-written explanation of how ME was stigmatized. The author affirms us and doesn't mince words.

Yes, the more things we compare, the more likely we are to get a significant result

If you're in pain, they should just give you as much opioids as you need. It's better to be addicted to drugs than in intractable pain.

You're right, I saw that later. Still, that really needs reproduced.

I appreciated your summary and there's a decent amount of good research here. I'm surprised you listed the home-based testing and FUNCAP questionnaire as honorable mentions--I saw them as pretty significant. The home testing study found that doing cognitive testing made pwME exceed their...

This is a good description of the biographical disruption I faced due to ME, becoming ill at 21 while still in college.

Well this makes a lot of sense. People with explained illnesses are much more in control of their lives than people with idiopathic ones. They are more likely to have: Emotional support of family Recognition by broader society Doctors who care enough to try treatments or write referrals Real...

I read the whole paper. It describes the effect of ME on my social life very accurately, and I feel comforted that other people are going through the same thing as me, and I feel heard because it's published in the sociological literature.

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...