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When people say this, I take it this way. They're trying to dispel the psychosomatic notion that they're hypochondriacs, deconditioned, or afraid of exerting themselves. If the BPS model was true, we'd basically never see athletes get ME.

Additionally, how much one "markets" their symptoms can have a large difference in how others perceive them. I only describe my symptoms in terms consistent with the truth I have a serious medical condition. For example: "I have brain fog" vs "I have cognitive trouble." "I'm too tired to do...

"Symptom onset must be gradual"...huh?! We know ME onset in adults is often shockingly sudden, and I'm sure it's similar in kids. What are the authors thinking?

This would be very useful for gov't agencies around the world once translated. Even in the United States, we don't have a specific listing for ME/CFS. On advocacy task I'd like to see is campaigning for one. A listing that would automatically approve people if PEM significantly limits their...

That's bad, but it's good to see a paper calling them out.

If the true reason it stopped is lack of effectiveness, not because the drug company just gave up, at least there's some closure here.

I've used the term "woozy" as a vague catch-all for feeling not myself. And how I used "tired but wired" is more about PEM than sleep issues.

Yeah. When are we gonna stop fobbing off illness as just stress? Even if stress is a factor, um, if stress gives you diarrhea or constipation you still have medical problem. And we've probably done little to figure out IBS because it's not always severe.

I received my fourth Covid shot yesterday: The Moderna Omicron booster. I've had no negative side effects beside a sore arm. Covid shots have made me feel much better for periods in the past, but it's too soon for that yet.

This is horrifying, above and beyond anything I've experienced in America. Her teeth were moving in her mouth, she was dangerously underweight because she couldn't stop vomiting, and she was so uncoordinated she couldn't cut food without hurting herself...and she was told it was psychosomatic by...

I have a similar story. I had ME for 3 years before knowing I was chronically ill. I wouldn't say I thought it was psychosomatic, but linked to my pre-existing mental conditions. Never thought about my illness much because I didn't understand how disabling it was for a long time. But if you...

I've never seen research about this. It would be hard to fund/publish because the results would shock people and be highly controversial. But imagine if we could follow a large cohort, and carefully track their symptoms and what conditions those symptoms are attributed to over time. Perhaps...

Moved from the Paul Garner thread: [I think you're talking about this article:] NHS ‘nowhere near ready’ to deliver new Alzheimer’s drug, doctors say

CNBC did an article on the economic cost of long Covid: Long Covid may be ‘the next public health disaster’ — with a $3.7 trillion economic impact rivaling the Great Recession

I have trouble communicating with doctors as well. Also, when I told one neurologist I applied for disability, he expressed doubts I'd get approved because he claimed they rarely awarded it to young people. I got approved. For autism. They decided I became disabled when I was 21. On a date...

These people have no idea what ME/CFS actually is. They're trying to say, with a straight face, that 17 percent of people working a highly strenuous job meet the IOM criteria for ME/CFS by using single questions from a questionnaire not designed to screen for ME: Rigidity of gait?! These people...

This seems to be the pattern of usage in the US. In the early 2010s, CFS was common, but this decade, ME/CFS is most common in formal contexts. Usage of just ME in the media seems rare but increasing.

Yes. The "treatment" they're giving is so useless that we can be almost certain it's a placebo (at least for physical symptoms). They basically showed how strong the placebo effect (and/or natural recovery) can be--people convinced themselves they were 22% less sick.

Hopefully it's just a brief pause. I hope the quality of upcoming will increase. The NIH study, Decode, and RECOVER treatment trials have me optimistic.

I like mindfulness and walks in nature but...can we get biomedical research so I can do it between running a business and working out instead of between light reading and taking a nap? :banghead: