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Oh I'd consider thousands of alternatives, but off the top of my head, I always liked the straightforward accuracy of post-exertional symptom exacerbation. There are many, many words or phrases that wouldn't illicit the sort of character calumny that comes with malaise. But it's not just...

This is a good description. It really does capture what some of us experience, with obviously specifics varying. I like the description. My only problem with it is only half of it actually pertains to malaise. The other half does not, and is not conveyed to clinicians or anybody else for that...

Isn't this to some extent an internet information source - one that some people also use to discuss information they discover? I'd wager there are patients that expect very little from the medical profession. Magic words? Never asked for that. Just better words, ones not so overtly bad...

A) I'd ask that you read what I wrote; B) I would hope we patients would be able to both give credit and criticize? :) I've at times been critical of most researchers and clinicians; I've sung their praises, too. I hope I'm being authentic and constructive. I'm very interested to hear how you...

Hmmm. Really? How long has it been since you watched Gone With The Wind? Medical definition of malaise: "Malaise is a general feeling of discomfort, illness, or fatigue that has no clearly identifiable cause." This definition generally falls far short in conveying what patients pwME experience...

Yes, and similarly I never use the word "swoon" when describing my symptoms. :) And yes, I suspect we've all caught ourselves word-smithing our disease to doctors, gaging their reaction if we slip into convention inadvertently. I realize it is what it is, but medicine is broken and for it...

For 15 years I have been coming across malaise in its technical setting every single day far more times than most doctors will in a month of Sundays and I can assure you it carries baggage. If you were exposed to the word before your medical journey, then I'm pretty sure it resonates with you as...

Malaise??? How about arthralgia and myalgia? Does anyone think malaise is better that these two medical terms at describing joint and muscle pain, with all the connotation baggage malaise foists upon its recipients? Sorry, I'm not trying to pick on @Jonathan Edwards, it's just this is...

Copied post Malaise??? How about arthralgia and myalgia? Does anyone think malaise is better that these two medical terms at describing joint and muscle pain, with all the connotation baggage malaise foists upon its recipients? Sorry, I'm not trying to pick on @Jonathan Edwards, it's just this...

Good post. And it is beyond me. For the narrative, the definition, one phrase or even word at a time. But I fear so much more than editing factors into what gets play time. No excuses, though. It starts with wording. Patient advocates need to stop giving ground.

Some believe what they've been taught. I imagine them as mostly emotionally uninvested and intellectually indolent. Some know better. There's a whole flotilla of reasons for that breed's stance, none of them ethically good, as far as I'm concerned. I'd wager history will not judge them kindly...

Too many people telling the world what it needs to interpret vague symptoms as. Too many doctors exposed to sham definitions and characteristics. It's not surprising, really, when ME/CFS is broadly categorized as a "fatiguing illness." That's just rot when it comes to patient utility or...

In part, but this appears more about the protracted trajectory an accurate description of a disease often must take before it is adequate. Maybe me referring to the issue as a loop was a poor analogy. We are boxed in by lousy descriptions. Worse than lousy, they are harmful. They shape new...

Oh dear, does no one recall the initial control groups?? What a total mind-fuck. It seemed to many the NIH never had a serious approach to investigating ME/CFS. Don't even start me on the personnel.

I just listened to this. Overall, I thought it was encouraging. But "post Lyme syndrome" suggests to me the kids he plays with, and I thought it concerning, since, you know, there is no such thing, and I would imagine someone of his stature would know this. Of course, it could have simply been...

Many of us thought he sounded committed to trying to understand ME/CFS, too. :(

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.