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Why do I feel like a waif in a Dickens' novel? I'm sure it's the time of year.

Not always. In pwME, that is frequently not the case. With pwME the "deliberate" aspect is learned and then relearned, and can remain a moving target. Same holds true with what you casually refer to as routine. This is why pacing has to be individually recalibrated every so often. Might not...

My issue is with the word "malaise." It cheapens and sullies decades of accrued patients' experience. It reduces a definitional symptom cluster down to a quaintly idiosyncratic period piece. I don't care if some doctors claim to understand it clinically different than the typical layperson; it...

If my memory is ok, this holds true for most pwME. For a minority, including me, it does not, and in fact is flipped, i.e. mornings are optimal, noon frequently marks the beginning of a precipitous decline. Curiously, many reports I've read from channelopathy patients mirror most pwME in that...

Yes, which is what I told her. I didn't tell her about any concerns I have about LC. It's sad we who know relatively so much about it have to worry about those close to us that do not (irrespective of vaccination).

I cannot begin to relay how I misconstrued the title.

Sure. Irony and all aside, my overriding sensation is puzzlement. Why didn't the vaccine protect her; weeks had passed before exposure to other earthlings? Why didn't it mitigate her symptoms to minor annoyances as mine were in its absence? "Shit happens" aside, it really is counter-intuitive...

Just passing this on cuz. My wife got her third Covid vaccine a month ago. I declined because of annoying paperwork I had to fill last time, otherwise I probably would have gotten another one as well. We had guests stay over. A couple of days after those guest left, my wife tested Covid...

I can appreciate where this may be coming from; none of us likes the cavalier hijacking of an acronym which for years has been considered unique to us, and therefore partially definitional. However, I do think there are a handful of conditions that share it with us. And yes, the other two as...

If I were attempting to define or measure something, I'd start by not assigning it a misleading label - or if that ship has sailed, making sure everyone knew that label was misleading. Shouldn't be hard to shed "malaise" since so few of us live in antebellum Charleston.

In total over a decade? I'd guess more than two or three years. In total. I was testing positive off and on for Borrelia and Bartonella and Babesiosis. All three involve abx, even babs despite it being a parasite. I still test positive for two of the three.

I've taken lots of abx for long periods of time, many times over the past 10 years or so. But I was symptomatic for ME/CFS for a decade before ever I ate those abx. Still, when I first started these protracted abx periods, they helped mitigate my symptoms. They never bothered me. Now, however...

Or also too often, what the doctor thinks is important.

If they said they found no evidence of pathogens (sorry for my memory lapse), this would logically border on the absurd given the samples were from the U.S.

"Patients'Experiences of Disease Should be Taken More Seriously, Study Says." Even the title is patronizing.

Well, sure, maybe. Depending on what you're looking for and the diagnostic, certainty can be hard to nail down. Regardless, I am no fan of long-term abx, at least not for me.

Perhaps more individuals being told more recently they test negative to a wider array of pathogens, as more are being tested for? Since many diagnostics flat out suck, some of those reporting no infectious onset, or they do not know, may simply have been incorrectly informed - which would change...

I agree with everything you've said here @Andy . I was in an ME/CFS study once a few years back that in part tried to assess PEM through two CPETs and fMRIs. I was in a hospital for the testing four days, if I recall correctly. Blood work drawn every few hours for those four days and nights...

"Have you ever been told by a doctor that you have CFS or ME?" is not really meaningful. You think most doctors - or other "health professionals" - in the US understand what to look for? This was a garbage diagnosis 30 years ago, and it remains a garbage diagnosis for most clinicians - who were...

I wouldn't be surprised if this, if accurate, is more peculiar to the US than some other countries, and reflects the folding in of many vector-borne diseases.