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The decline in income prior to diagnosis is stunning and proves what we knew all along: Many pwME have a delayed diagnosis, despite being very sick. It took me about 3 years 9 months.

I hope they publish something because a negative result could rule out a mechanism. On an unrelated note, I now wonder what the people who raised money to conduct a trial of BC-007 in ME/CFS are going to do with their funds.

The authors must think ME feels like being a little tired and that people with ME are just too weak-willed to get on with life. It's extremely arrogant and ableist. It makes me sick. Many times in my life I didn't exercise or sleep enough, and it's incomparably different. When I was sleep...

This paper might be important by making the viral persistence hypothesis more difficult to support. If the authors are right, then some people have remnants of the spike protein but it has little to no influence on the disease.

We must try to get our voice heard no matter who is in office, even if they're wrong on a bunch of science issues like RFK. He's expressed a desire to take ME more seriously in some of his books, so you never know.

He's still an AIDS denier?!

I worry about this a little because people with severe ME don't tolerate travel well. If doctors are understanding, it's better to care for them in their local hospital than in a central location like London. It's probably necessary if it means better care though.

Your observations are spot-on I think.

It makes some sense, if we call LC anything that lingers more than a few weeks, then chronic LC (or long long Covid, heh) is when it lasts long enough to be a chronic illness, like a year or more.

I have a set of Earpeace earplugs. I don't use them for sensitivity to ordinary sound but to loud noise. But they work well and have inserts so you can adjust the level of noise reduction.

The authors of this paper simply don't understand the nature of long Covid or chronic illness in general. People expect certain outcomes from therapy because they know their bodies.

This has all the tropes of bad 2010s era autism reporting. Autistic people aren't withdrawn into their own inner world, they just have a different way of interacting with it that many non-autistic people don't understand, and have thus mislabeled as withdrawal. Granted, this article is about...

Quite fascinating. They seem to be going in the same direction as Jared Younger--thinking a cause is neuroinflammation triggered by ordinary events after COVID dysregulates the immune system.

Just a couple weeks ago I spent the whole day running errands. My last stop was at the grocery store. I was so tired I started putting stuff in my bags without scanning them, at the self-checkout. When I realized what I was doing, I dumped all the bagged groceries back into my cart and went to...

I thought of it a bit differently. If you believe autistic people are more likely to have FND, then doctors will just say "You're not sick, just crazy, it's the autism" much like how they dismiss women. Autistic people may describe their symptoms in language others have trouble understanding...

The old "You're simultaneously a mentally frail malinger and an overachieving perfectionist"

ME/CFS is one of the factors that forced me into being alone and celibate. It's good that researchers are recognizing the effect of systemic conditions on sexual health.

Yeah, a disease state means you know something about the pathology. We still know rather little about what causes different manifestations of long Covid, and it's almost certainly multiple disease processes that may share some aspects.

Since long Covid is now any health problem caused by Covid, it seems long Covid is more of a cause than disease. A category of illness rather than one illness. It resembles physical trauma, where all the injuries have the same cause but many different outcomes and can affect any body part.

Yes. I was worried but I'd have been a lot more worried if I hadn't had migraines with aura before.