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I have had this problem for about two decades, and fainted hundreds of times. This may or may not be related to the heart preload problem, I guess it is. Most cardiologists do not test for that. The primary risk for me is getting too worn out, and then going up stairs. Though I have also passed...

Aggressive sleep therapy, using drug induced sleep, has been tried for ME. I think it was at Charing Cross Hospital in the UK, some decades ago. This might or might not have been intense enough to qualify as a coma, where the brain becomes completely unresponsive to external stimuli.

The arguments used to defend PACE are mostly medical politics. Political rhetoric has replaced scientific argument and evidence with many PACE defenders.

A question I have been concerned with for a long time, and plagues ME research as well, is how good is "science" when you have no idea of the actual diagnostic entity of the patients in a study? We are trying to deal with this in ME right now using deep data on highly selected patients, like in...

This is partly right. Some senior psychs do realise, but its been publicly admitted, even written up in books. The issue is then, what can be done about it? Psych diagnoses are best guess, not scientific, but without diagnoses you are operating outside of medical norms. Of course even with...

I will believe in flying fish and elephants before thinking CFS psychogenic psychiatrists. [Satire]

Exactly.

Hope is better than optimism.

This was the period in which ME was first formally described, if I recall correctly. I have not read this history in a long time though. The '34 outbreak followed earlier cases back to '32, but everyone was perplexed at the time about what it was. Every outbreak seemed to get its own label. ME...

Hi, the support company can offer me a different support package. Its slightly less hours but I still get support. Do ask about alternatives if you find yourself in this situation.

I sent a medical report in two weeks ago. Today they deny receiving it. In less than two weeks I lose all support.

I am not legally trained, but I do know most law suits for damages have failed. I also know a great many suits for insurance and medical coverage have succeeded. The grounds for a suit, and the type of suit, are specific. There are a great many protections under law afforded doctors. I have...

https://www.sciencedirect.com/topics/medicine-and-dentistry/pathophysiology

The brain? Isn't that an irrelevant squishy thing that houses the mind? The mind is all important, all powerful ... the squishy thing is not. [sarcasm]

That is like saying if we claim we know pathophysiology in diabetes then we must understand everything about diabetes ... or cancer, or whatever. We don't. We know some of the pathophysiology, but we are a long way from knowing all of it.

I want to know how most of the medical profession repeatedly falls for the pseudoscientific stuff.

I don't think this is valid any more, it was a decade ago though. The problem is we know tons of things, like 2500 biomarkers, clearly showing pathophysiology, but we do not know which are primary, secondary, or false positives, or which are the most critical. So we have a long way to go. But...

You are too kind. I would go with extreme level of stupid.

I finally figured out who I was during the time I was going from mild to moderate/severe ME. It was a bad time, but I was still able to figure out where I wanted to go in life. I just lacked the capacity. I am happy with WHO I am. I am not happy with WHERE I am. Like several people on this...

Ditto