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It's encouraging that doctors are becoming more aware of PEM and that doctors like here are getting coverage and explicitly saying LC isn't a psychological condition. Here's a transcription. Binita Kane: Yeah, and I think to understand why we're in this situation, you always need to look back...

Maybe mindfulness cures the immune, neurological, metabolic or whatever dysfunction that causes long Covid. Perhaps it can regrow brain cells, erase tumors, restore sight to the blind and regrow lost limbs. Maybe we all just need to meditate for 15 minutes a day, and we'll become immortal and...

I read the summary. It's pretty interesting. I wish the Decode team the best, and I hope we find significant results.

I experience a sensation of time speeding during severe PEM. I might look at the clock and think, wow, 5 hours passed. I don't find it incredibly jarring though. I wouldn't describe it as completely "losing" periods of time.

I don't understand the point of health insurance if they can just deny stuff after the fact. Hearing all these horror stories, I feel relieved I never had private insurance. (Medicaid then Medicare) ProPublica suggested another article with a similar theme: UnitedHealthcare Tried to Deny...

I've seen two rheumatologists. One was at a local teaching hospital in the US. She told me she doesn't manage ME, and to do self-help graded exercise therapy. I told her that wouldn't work and that the PACE trial proved it. She ordered a few tests for autoimmune disorders. I was positive for...

If autism is associated with changes in how microglia or astrocytes behave, and if ME turns out to be a disorder of these cells, it might explain my case. I got ME without a clear trigger. Speculating wildly, I wonder if the intense stress I experienced at the time of my onset was enough to tip...

Transcript: Trish Greenhalgh: Some people watching this program may be thinking, "Well...long Covid's all in the mind." I have doctors say that to me at least once a week. People say it on social media. "This is functional, this is not a physical condition." As one of the world's leading...

That implies they did a very careful job. I can't wait to read it. Sounds like there's a decent chance we'll see it this year.

They're so sad. They can't cope with the truth so they're making their own bubbles of stupidity.

Because you became potentially eligible for Childhood Disability Benefit (DAC Benefits) which you can get if you have a retired, disabled, or deceased parent.

Sorry, I had a specific meaning in mind when I said re-assessment. PIP reassessments in the UK are like starting from scratch if I understand it. But continuing disability reviews rarely kick people off unless they truly get better.

Basically all pwME and their allies say that trials without blinding or objective outcomes are worthless. Asking out of mere curiosity, there any trials of CBT in mental conditions that would meet this standard?

It's disturbing that they list premenstrual syndrome.

I'm autistic and I support biomedical research that respects autism as a difference rather than necessarily a disability. Unfortunately the research climate just isn't providing this.

We need to stop twisting the meaning of words. Medically unexplained should mean medically unexplained and functional should mean functional.

I doubt the main cause was long Covid. The CDC estimates only 7% of adults have LC, and not all of those have symptoms that limit exercise.

Many phones have text-to-speech functionality. I believe it's a default Android feature. Pull up the keyboard, tap the microphone icon, and you can dictate your texts. The voice recognition provides good results even in noise environments or if you don't enunciate every word.

The pandemic has been a "double loss" for me because I would go out more if Covid wasn't a problem. Not much more, but a little.

The outlandish ones have certainly stuck in my mind, though I certainly wouldn't try them: Garlic Drinking your own urine Black salve (applying corrosive chemicals to your skin)