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I recently had tests ordered that seemed to have this sort of platelet assay in mind, or something similar. The tests included Thrombotic Risk Profile and Collagen Binding Assay, among others. Most seemed to pertain to clotting stuff. My platelet counts trend low, but I believe this was an...

Why is this kind of thinking allowed? Aside from cost-cutting benefits, why have functional anything, somatic anything, this gruesome psych charade that is wrecking lives already in shambles? Who walks away a winner? Insurance companies and state agencies and miscellaneous zealots responsible...

I can almost hear Rod Serling now: ...the middle ground between light and shadow... between science and superstition...an area that we call....The Twilight Zone.

Different strains and species (I guess species is not a thing with viruses?) pose a real conundrum in many parts of medicine. Not just in terms of symptoms and severity, but in terms of diagnostics. It's a quagmire in some parts.

Manage rumination? Who are these people??

You said no causes were included for three conditions. I spent 5 minutes googling the two largest and highest regarded medical references in the US, and my first hits included causes. As for what clinicians will or will not believe - it has been my experience that most will believe the first...

Yes, I'm sadly familiar with the concept of corrupt science. And you're right that prevalence or popularity does not necessarily mean good science, but it may suggest dogma. As for evidence and what can be proved, this is a good rule of thumb, but it can be undone by something as simple as who's...

Two of the most common sources for clinicians in the US are the CDC and NIH: https://www.cdc.gov/psoriasis/index.htm https://www.ninds.nih.gov/Disorders/All-Disorders/Multiple-Sclerosis-Information-Page...

In theory. But far, far too often, not in the real world. In the real world Science is many times defined by who has the greater lobbying platform, the loudest voice, and yes, the better packaging. If we continue to fail to impress upon the global medical community the dire nature of our...

The loop I refer to is the loop of a vaguely defined/described disease that - when we try to get more specific and realistic about the symptoms (which today pretty much are how the disease is defined) and potential causes - we are referred back to those ill-chosen phrases that define us for most...

And there's the loop. I'm suggesting breaking out of the loop, simply with some rewording. All within the confines of Science. I wouldn't want it any other way. No one here would. But what I'm hearing smacks disturbingly similar to that EBM gimmick that ultimately sunk beneath cliche status...

It's how that concept is qualified that I am trying to call attention to. Most of us really knows the descriptions of ME/CFS are at best anemic. Pretty much the only good thing that has happened definitionally over the past 20 or so years is the recent inclusion of PEM as a salient feature - but...

Idea. An approach based on an idea.

Dementors? :) We've lots of smart advocates over the years, and I applaud their efforts. We still shoulder the burden of crap descriptions of ME/CFS that your average clinician will see. We need to draw a line in the sand, and I say lets start with Descriptors.

Wording. If you're asking me to fix it now, I no longer have the skill. But I know that how we are currently conveying things is a slow endless loop. I know wording like fatigue and unrefreshing sleep and malaise and brain fog and lingering etc are strikingly inadequate and misleading and...

The present set can be, and frequently is, interpreted as "the aches and pains of every day life". These facts fail to convey degree. The present wording describing symtoms - in lieu of biomarkers - usually works against imparting a sense of the catastrophic degree to which pwME are afflicted...

Were that only true. Nods. Neither is crafting definitions that are ambiguous or, worse, misleading. Lingering fatigue anyone?

Well, yes. But isn't this somewhat misleading? Perhaps "a history of known infection", or "symptomatic infection" may be more accurate - and more suggestive that that 50-70% figure may be deceptive. There's a lot of diseases that can be asymptomatic for years. If you're unfortunate enough to...

I should have known there'd be a thread here. :) They're including a lot. I suppose for them it's good to cover as many bases as possible. :rolleyes: So, the obvious question: Why post "active"? Post acute seems much more appropriate and less assumptive.

Minted by whom? Used by whom?