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I see under infectious diseases they've listed Lyme disease and parasitic diseases. How do they definitively know whether someone actually has Lyme disease or a babesiosis strain or a bartonella strain? Seems like they are comfortable building in a number of assumptions that may muddy the...

Channelopathies have PEM-like delays of symptom exacerbation, typically 12 to 24 hours after exertion. What I find particularly interesting is their version of PEM comes after resting following exertion. Mornings are frequently bad for such people precisely because rest is involved.

True. In fact, my wife is normokalemic, and her channelopathy has had its gene - KCNJ2 - identified and verified.

I think the question for many pwME is somehow wrong or misapplied. A PEM threshold is not necessarily set; it can vary. So a limit that you observe one day may not apply in 30 days. I can shuffle around some days for over 20 minutes, but on others, such an extravagance can result in bad stuff...

Or a third party antigen allowing for this EBV emergence, i.e. there's an immune dysfunction that provides for the reactivation of EBV that was established though a different pathogen. I'm not clear on how either could be turned on or off by any mechanism; that doesn't mean it can't happen.

It's possible this study inadvertently demonstrates a concept of immune tolerance, and by extension, its implications. I am not referring to it as it pertains to protecting embryos. In some circles, in theory at least - and if I'm not mistaken - this framing of immune tolerance relates to how it...

I cannot navigate their website. I'm curious as to the credentials of the researchers and clinicians involved in all three diseases, but particularly Lyme. This is in New York. Who are their ME/CFS experts? They're are plenty of good names in that area. Lyme experts? LC? I would think the...

If it gets this far, they should expand the search during those autopsies to include other pathogens.

There are a couple words that may lose their conventional meaning with ME/CFS. Balance/vertigo/dizziness come to mind. Neuropathy. Brain fog - yuck, but it's accepted (personally I'd opt for cognitive decline and the erosion of clarity). Ditto for malaise, not happy with it. But all of these...

Perhaps, even if ME/CFS is very much tied into energy issues, PEM is triggered by something other than exceeding or insulting energy thresholds, e.g. heart rate or blood flow or vascular impairments of a sort.

I've learned over the years to mitigate or often avoid PEM from overdoing things "physically" , that is walking, lifting etc, so I may be off in this, but it seems to me that those produce PEM in 48 hours or so. But emotional stress or heavy and prolonged concentration will total me within 12...

My first thought relates directly back to the thread title: There is an argument that says emotional stress and sensory stimuli result in forms of exertion, e.g., heart rate, breathing etc. Concentration and focus are forms of exertion, too. If anything, there may be a consistency between what...

Yes, it may help to see it in black and wight.

You may be correct. In my layman's way, I've seen enough cannibalism among the medical community - specifically over contested diseases - to leave me with the impression that most doctors just won't give a shit what or how anything is explained to them, even from a respected and credentialed...

Or the devil in the details. Everything is a concept. Everything. It is baked into whatever idea you are trying to convey or discuss. Bringing attention to a medical term and then adding "concept" to it is not only redundant, it potentially brings attention to and then amplify the message that...

A few years back I tried to distinguish between my POTS and my OI, but I just go with the flow these days. I was tested for POTS day and night - about once an hour or so in the day at least - for four days. Abnormal HR and BP within 10 minutes of standing plus tachycardia. But I don't know if...

I am always better in the morning and I worsen as the day drags on. It's not due to sleep because my sleep always sucks. I've assumed, in part at least, that it relates to OI and POTS. I seem to recall a poll about morning vs evening and I thought it was here. Maybe not. But I do recall most...

The brainstem has been implicated many times in OI and ME/CFS and fibro and Gulfwar syndromes. I've had it suggested to me, for me, in two of those four, once after a 4-day stay at a well-regarded study for ME/CFS. The question for me is, what damages the brainstem and then maintains that...

Add to that the chronically ill who can still work, and a potentially large voting block could emerge. Many millions of sick people under a single banner. Larger than most unions.

For many clinicians Lyme Disease as a diagnosis is undermined - even undone - by the Lyme Disease concept. The latter is much broader and unwieldy and contemptuous of conventional medical doctrine. As for any clues we can make sense of in process terms, I'd only caution against reducing things...