Search results

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?

What an odd report. Is it a Science report, or a History report? Isn't medical science constantly reinventing aspects of itself because its history is laden with errors? Flat-out whopper mistakes? What if the old studies were biased or based on flawed inferences, etc.? Look at some cancers. At...

That is pretty much my experience as well. Except cognitive can last longer if I've concentrated/focused longer or thought harder, e.g. employed more complex reasoning. But it's pretty quick. Emotion triggers can be even faster and can last longer. Physical typically are delayed about 48 hours...

I am confused by the exertion=exercise assumption. I think I understand their goal: provoke PEM through amplified exertion, and demonstrate that through metabolite comparisons. That sounds reasonable. But how would metabolites come into PEM caused through mental exertion? If PEM=PEM, then...

I've done the 2-day CPET. Here is my problem with it: Unless they bring that bike and mask etc to your house, many of us will be crashing when we do the first CPET. I was. Simply traveling to the research site levied a toll. So I did not say anything, but I know my baseline could not possibly...

"This will involve our current clinical ME/CFS, Chronic Lyme, and Long Covid research project aiming to identify possible causal factors." I'm unclear why some of these researchers like to include Lyme when looking at ME/CFS. More to the point, I'd like to suggest to a possible causal factor...

Fatigue, balance, headaches...they are all "lingering". Lingering like a scent in the air, or a gaze, or a kiss. It's all so... romantic. And implicitly temporary. Researchers on all sides of the endeavor, please stop contributing to the problem with careless wording. These aren't novels you're...

Has any body heard anything about CD57 levels rising with some viruses (e.g EBV and HIV) and declining with certain bacteria (e,g, Lyme and mycoplasma pneumoniae)? I wonder how reliable CD57 is as a marker. Unfortunately, I've seen nothing convincing either proving its utility or disproving it...

@Samuel , my bad. No worries. I am tone deaf when it comes to the written word. Which is why I limit what I post anymore.

? I do similarly. So odd. I can only assume you only assume as to why. Sorry to diverge from thread topic. When your teeth fracture and crumble you are more inclined to flaunt protocol.