Search results

At the risk of being off topic, maybe what society needs is an institution tasked with the job of directing research into poorly understood diseases.

Outside the UK there's on average even more neglect of ME/CFS, going as far as not even recognizing it. How can one explain that, if not with a systemic problem that affects medical research, medical practice, policy as a whole?

The demographic split could be due to long covid and ME/CFS intending to capture different things. Long covid just means "didn't recover quickly from covid 19", whereas ME/CFS attempts to define a disease. They are presumably the chance that someone will have long covid, by gender.

I think it's more likely that the politicians have been manipulated by BPS people, mostly with misleading research papers. What BPS people have always said (usually between the lines) that ME/CFS is a made up illness by people who are very confused and in need of psychotherapy and an exercise...

Is lack of care really an adequate explanation for the fact that historically no country has seriously attempted to help us patients? In my opinion attributing negative psychological traits to a large group of people (the people in the governments around the world) doesn't work as explanation.

Great article. A journalist who finally says what needs to be said.

It looks as if TG is from the same academic circle as the PACE authors and has more or less the same views. A dangerous situation for long covid patients for various reasons. Admitting that PEM is real and the implications of that would also mean admitting that ME/CFS patients were badly...

I've been bitter today (trying not to be) because the best interpretation of what happened is that long covid was created for all sorts of bad reasons and primarily to avoid a ME/CFS label. They had to invent a new label because ME/CFS was too toxic and couldn't be used. In some ways this is...

Maybe he became a good singer because he often felt inadequate.

In a way, these studies test certain assumptions common in CBT, for example that the problems of the patient are due to faulty beliefs. Maybe beliefs have simply little to do with whatever problems patients have.

I wonder if Collins will have to answer some hard questions once the devastation caused by neglecting research into ME/CFS and PVFS will become evident.

You're right, I had a moment of bitterness there. LC is in very favorable circumstances.

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...