Search results

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.

https://mail.google.com/mail/u/0/?tab=wm#inbox/FMfcgxwDsFXrqrKLhBTgxngxXbsWFLSG Powassen Virus - Are they sure in UK? Maybe the "typical" Lyme encephalytis found in mainland Europe vs PV?

Cats, dogs, all kinds of carriers. Bartonella is one of the weird ones. It manifests it many different ways. It is easy to mistake for another disease. I was fortunate on a couple of fronts: I had a common manifestation - bad pain in the soles of my feet. Plus, I carried one of the few strains...

Oh, good. So the video is NOT about ME/CFS with a title that just says Chronic Fatigue. Cool.

Er, is that really the title of the talk? If it is, eh, it may or may not be relevant to us. So why care? I'm not watching it. Why? Because it seems to me lazy IF it applies to ME/CFS and not just a single symptom, and IF it applies, that potential sloppiness hurts.

Not to digress, but I seem to recall reading somewhere that the number one cause of disability in vets is Bartonella. Can't be sure since I don't recall where I saw it, though.

It should have been before 1969, but I would not bet the ranch on that.