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Delayed onset may ultimately reduce down to delayed onset of ME/CFS symptoms - not necessarily delayed onset of disease or infection. Two broad examples that come to mind are asymptomatic disease and relapsing remitting disease. Also, now that I think about it, "packaged" diseases that...

Sure, it's good to debate any views, and to disagree. But you suggested her's were unhelpful. You don't think medical experts make assumptions all the time, and consider their's earned? I might suggest HJ could qualify as an expert on ME/CFS issues. But it does afford them the right to opine...

Why? She's earned her assumptions. She helped put us smack in the public square, at least for a time. Besides, we all have some earned assumptions, just as most of us have opinions as to culprits , whether pathogens or immune issues or what have you. Should she shelve hers until something...

This is an important step in the right direction, but I'd suggest more political than anything else. Hard fought for, though, yes. Perhaps a different way to view her reporting is it informs patients. BTW, what agreement? As for good faith... This strikes me as an odd observation. So you are...

Not a good era for the CDC or NIH since the 80's...Seems to me heavy on political expedience and light on deep and accurate and patient-centric research. I mean look at what got screwed up during the 80's: AIDS and Lyme and CFS. How many people grew disabled in the U.S. alone? Not a decade for...

Doubtful it was the right thing to do considering where we find ourselves today. Moreover, if I read his note correctly, he was trying to disappear a disease entity that was created by the EIS in lieu of ME - or at least reduce it to the symptom of chronic fatigue. Shouldn't he have instead...

Are these patients misbehaving in some manner, and if so, who makes that call? Prejudiced? Against institutions that not just abandoned us, but worsened our lot by deliberately psychologizing us, and rewarding the psych industry and enabling insurance carriers to deny our claims? WE are...

OR they assume the patient is not self-aware enough to tell the difference, or the patient is catastrophizing because they read an article in Psych today. So do depression and grief and ennui and eating too much turkey and laughing too hard, that is, cause weariness out of proportion. And if...

I too use "crash" to convey PEM to anyone not knowledgeable of ME/CFS, ie, pretty much everyone i know who I'd be willing to discuss ME/CFS. But crash is hard because it's so cross-elastic, it's used for so many conditions. My bad about the sequelae thing. In my head it was synonymous with...

Exertion-induced sequelae? EIS? I am particularly fond of EIS because it's a full-circle acronym in the US. In the US, EIS stands for Epidemic Intelligence Service, the part of the CDC that investigates new or unusual disease outbreaks. It was the EIS that looked into Lake Tahoe and supposedly...

Ha! Tops 20 minutes, @Mij . But I've had my same doctors for years. No one even bothers to ask me about my symptoms anymore. Usually we fill that quarter hour talking medical politics. ;)

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...