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merged thread A couple of the authors' names got my attention, so I skimmed this. I honed in on their Lyme analysis. I personally would give that a "D" grade, but I'm sicker than typical these days so perhaps I'm being too harsh. I cannot speak to the strength of the rest.

I suspect it's not limited to liability concerns. Naturally there may be related concerns in play - for instance, insurance lobbies - but I imagine, because we're speaking the US, entrenched worries may run a little deeper.

Infectious diseases have an entire discipline dedicated to them for a reason - and still they proliferate. Many of them - many - have little in the way of a signature, and many have no way of diagnosing them serologically. There arguably may be a clinical signature, but who are we kidding? This...

Yes, but ME/CFS is quite often triggered after an elongated lag phase, so then by your logic it is pretty likely that this is the norm for ME/CFS. On the contrary, I think it can be telling and help with the diagnosis, that is, help determine which infection brought on ME/CFS. I think this will...

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...