Search results

It is frustrating to the nth degree. :(

Yes, it is, but not as bad as it used to be. Still treated as such, though. But adding PEM to the mix helps enormously. I think this is incorrect in that it specifies a condition has to be epidemic. I can match ME with a different encephalomyelitis that does not manifest in epidemics. The...

Right. The take away is that in the US, EIS people - or later their CDC superiors - replaced ME with CFS. CFS WAS more vague, but that doesn't mean ME wasn't folded into it. Yet by default, most US victims had only a CFS diagnosis to cling to, and accordingly sometimes earned the disdain of...

It's a non sequitur to suggest that a belief that ME/CFS is not a disease, coupled with a belief that ME/CFS patients can enjoy improvements after medication that last for years, but due solely to the placebo effect, might present potential problems? If so, I'm guilty. But you've managed to not...

We couldn't agree more here. Again agreed. No. That is inference, and it belongs imo more in the psych community than a discussion of ME/CFS as an organic disease. This theory, this line of thinking, leads over a cliff. You couple that with your stated inclination that ME/CFS is NOT a disease...

Well, in your capacity as a medical doctor, do you know of any diseases that have a history of a swathe of patients with remissions/improvements that last for years attributed to the placebo effect? Is there reasonable precedent here?

So @Jonathan Edwards , it would be fair to say you believe ME/CFS is not a disease and ME/CFS sufferers can have remissions/improvements that last for years due simply to the placebo effect?

I would. FYI, because many of us have been on the receiving end of a medical lie, and it matters that that be exposed.

I wouldn't. Nor would I rest my argument on such an ill-defined, amorphous concept. I'd simply say it is unclear why people got well when indications are they shouldn't have, so more research is needed. As I said, placebo is little more than a medical placeholder, and I find it inadequate and...

Cool. Maybe this is accurate. Maybe not. It's theory. But MY understanding is it cannot fix broken bones and it cannot last for years, ie, there are limits, usually understood to be subjective reports with time limits. This should not be a get-out-of-jail-free card. My main problem is not that...

Aside from the appeal to authority fallacy, responsible "scientists" have been making a mess of things quite reliably for many, many years. Yes, they get some things right, collectively. Yes, they get some things wrong, collectively. I can wheel out the psych model again if you wish. But...

But we don't lend it unrestricted domain or characteristics simply because it's convenient. Show me a text book that claims placebo lasts for years, for instance.

Define placebo effect, and then tell me it's parameters, eg, is it just subjective reports, do time limitations come into play, etc. THEN tell me what causes it. Then assure me that doctors don't just embrace it whenever they are too lazy to actually look for a causal mechanism...This is very...

I cannot. Your question is full of bias. Not that it acts for years in objectifiable manners. Placebo is not responsible science - it's a placeholder.

I suspect this is flat out wrong. Simply because we do not appreciate a certain mechanism(s), does not mean we slap on a voodoo label and walk away. IMHO, it is better to simply admit we do not know which organic factors are at play, and that more research is desperately needed.

My point is that we do in fact at times feel the effects of cell die off, irrespective of leeching.

When red cells die at abnormal rates, we feel the very real downstream effects as anemia.

You'd think, but maybe not. Definitions and thresholds can form built-in impediments which only autopsies may overcome - and even then you'd have to be deliberately searching for the right agent with the right tools. Certainly this has been the case with Lyme disease; it's dragged down, in part...

This is not quite fair to all those patients who had no recourse to a ME diagnosis for many years. It was only CFS. PEM does also help narrow the diagnosis now that it is more widely acknowledged as a major component of ME/CFS. Of course, there is more than one type of encephalomyelitis as well.

Well, I fear this is at least in part assumptive. Certainly there are other diseases where exertion causes an exacerbation of one's symptom cluster.