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I'm in no mood for silliness, and I'm not inclined to play games. If I recall correctly, some part of the brain's immune system has been engaged so long or so intensely that it no longer functions correctly. I cannot remember why this results in symptoms, but there are similar theories in...

Sorry, it was poorly expressed as I'm struggling. So? I think so. Maybe you should check the internet. I can appreciate how a patient's perspective may seem abstract, but trust me when I say for any of us who have been embroiled in this debacle for more than a few years, we usually can...

Generally speaking, it is my experience that although medics are well-educated, they are close-minded. They are governed by their own cultural biases just as everyone else is, but because of the arrogance that seems to be part of their ticket, and because of their direct and immediate impact on...

How do you imagine doctors get most of their information these days? ETA: In the realm of contested diseases, patients frequently know more than doctors as it pertains to their disease. The internet is in large part responsible.

Which of these is a contested disease? Which have active campaigns against them to deny they actually exist?

In many cases it is not. 1) I tend to agree that it is not neuroinflammatory but remain open to it being so. 2) It is not what has traditionally been labeled as a psychiatric disease. There are some boundaries that we should not cede, concessions we should not embrace. These are not academic...

No one associated with ME/CFS should. It could be catastrophic at the patient level. We should stick to neurological if only because of the ramifications of bowing to embedded medical biases. Protocol has its utility but it also can be counterproductive and even harmful. The patients should...

Most of us agree that there are many, many mistakes across ME/CFS, promulgated by advocates and enemies alike. Some are cringeworthy. Some are dangerous. I still would caution about tearing things down without first having something to replace them besides theory and stats and definitions and...

Nods. This was my thinking as well. If there is immunosuppression going on, what is making people feel sick? There seems to be a tie in to activation of latent viruses like herpes strains. But wouldn't there be evidence of those reactivations? It's a bit too convoluted for me, but there...

What if there is very little - next to none - replication going on? Just bleb aggregates that accrue over time in biofilms in the brain? Viral RNA released into the blood does seem like a compelling rebut, but in the absence of replication?. I am fascinated by a theory of immune tolerance...

In blood, @DMissa , in blood. Some things gravitate away from blood; you won't find them there. Who was it 15 or so years ago that admonished the then CFS research community to not look at tissue? Look at tissue. Comprehensively. Then we can talk.

Ah. A US dig? Misleading according to whom? Fact sheets aren't the bread and butter of forums, including this one. But they are a great add. Cool, but how well have "people with experience in relevant fields" served this community in the past? Yeah, well, you said it.

Except in medicine - or so most everybody in at least the US were taught. Isn't that what all of us, including you, have been doing - to one degree or another - on this forum?

I suspect Chia. That's likely the originating theory. Doesn't mean he was right, but he did publish some studies I think that supported his stance. A lot of people think he was right in at least a subset. That's true for everyone who likes to think themselves a ME/CFS pundit, ie, they and...

It is a far cry from ancient history in the eyes of 99% of clinicians. It is a far cry from what is taught to this day in medical schools. And it's a far cry as far as insurance agencies are concerned.

First, I'm happy to see you writing that ME/CFS is a disease. More importantly, it is NOT an ordinary disease. It is a contested disease, and as such is riddled with perils for its sufferers that ordinary diseases to not impart.

Not remotely what I was trying to convey. Sorry for the poor wording. I was suggesting the likes of the BPS folk will probably be happy to replace the remnants of the denigrated theory with their own, and trumpet it - but not on the patient advocates' website or whatever. You tear something...

Agreed. But I don't think that is what is being bantered around here. I may be wrong, but it seems to me the crux of the thread is to clarify what steps can be taken to correct what are perceived as other patient groups' errors.

I appreciate wanting to get it right, wanting others to get it right. Playing the role of spoiler, however, comes with risk. If we want to be naysayers, I suggest we'd best be in a position to replace what we're undercutting. What do we actually know about the biologics of ME/CFS? Not much...

I'm not sure. I don't even know if it works since I've seldom taken it alone - it's always in conjunction with other sleep meds.