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For some patients, a treatment that does nothing might very well be far better than the other treatments. Maybe even better would be to stop expecting patients who have health problems that nobody understands to do everything to recover.

Note how the long covid community obtained NIH funding. How not to make progress: constant infighting over illness name and diagnostic boundaries and causes while hoping to make progress on a pathetic $5-12 million annual NIH funding and some fundraising.

I had the same thoughts. Eric Lander directed the Human Genome Project. There's a good chance he knows who Ron is and will listen to him. The massive failure to contain the coronavirus will also create so many long haulers that it won't be possible to ignore the problem of infections causing...

@Tom Kindlon well done. Do you have any study with data on this phenomenon? I think I base my view on studies that I've read years back but cannot recall any details and suspect that in the literature there might not be any paper that contains a picture of this recovery curve (rather the...

I remember fervently believing that I would get well.

The way I remember it, many or even most people with prolonged symptoms after infection will recover within six months. A small portion will recover within a year. An even smaller portion within 2 years. And then the chances of recovery become very low. In LC it will presumably follow a similar...

Nevermind. Paul Garner also liked Recovery Norge stories. Seems that he turned to the BPS side. I suspect he recovered and now attributes this to his fighting spirit, positivity, or something like that.

TGF-β comes up in various studies. That's one of things I thought of. I remember reading multiple times in various studies about altered cell adhesion. And there is that Japanese study: Identification of actin network proteins, talin-1 and filamin-A, in circulating extracellular vesicles as...

Two of my nails have these little pits. Reading about it, it seems to be associated with psoriasis. I am not sure but suspect I have scalp psoriasis. Psoriasis is an autoimmune disease characterized by an abnormally excessive and rapid growth of the epidermal layer of the skin. I wonder if...

We should find out whether physical activity in cold temperature has a blunted PEM response.

I went freshwater swimming last summer. It felt like a much more intense activity than walking, but with a blunted PEM response. I need frequent pauses when swimming. Maybe that affects the PEM response. Stepping out of the water is hard for the body, presumably because the water improves...

She wanted to shut down debate instead of allowing it.

Hopefully TG will be able to learn and change her mind.

I suspect that TG believes all the things Wessely has told her about patients. A small group of vocal militants with false and unhelpful beliefs about the illess, like the existence of PEM. PACE a very good trial, CBT/GET safe and effective, it's just again those nasty patients trying to tear it...

If she is a GET proponent with a plan to avoid controversy and then quietly sneaking GET into LC guidelines, she could do a lot of damage to LC patients. It's bad that she is avoiding discussion of the problems with GET.

I'm sorry but I find it hard to trust Greenhalg. The impression is that she's trying to avoid anything related to ME. The most likely explanation is that her true views would not be welcome by ME patients.

Something that seems potentially significant to me was that the onset of the illness felt exactly like the early stage of an infection, when some early immune response has begun but the full response (with fever and more intense symptoms) hasn't kicked in yet. The full response never came...

I read the chapters that are available and it's unprofessionally written. There's also no data or references for many of the claims he makes.

Mystery illnesses in young women could be in part due to cosmetic product toxicity. It's funny how mouse models of human disease are considered highly unreliable, but animal models of toxicity are somehow considered safe and reliable.

Carnitine is the only thing that seems to increase my ability to function somewhat.