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Does this observation hold true over long time frames involving infection, e.g. three years vs. 30 days?

Diagnostically or otherwise, I am not sure what role channelopathies play in ME/CFS. It may be the end game, it may be irrelevant. Like the Australian school, I get the symptom similarities. Testing, though - how do you overcome norma-values? The concept of acquired PP is curious, and I think...

I think fatigue and fatiguability have as much of a discriminatory faculty for ME/CFS as they do for the flu.

I think emotions are easy to plug into the PEM equation, especially strong emotions. Heart rate, respiratory rate etc are all impacted by emotions. Regarding whether "the symptoms worsened as part of PEM are capable of feeding back on some inner biochemical etc...", it's the same as any physical...

In a roundabout way, I think that what we mean by a diagnosis of ME/CFS is that there are holes in the field of diagnostics, and researchers either don't see them or are willing to pretend there aren't. Diagnoses like ME/CFS ignore that problem by defining a disease with symptom-based criteria...

Years back I belonged to a forum where patients challenged researchers and clinicians. It was structured differently than here. Here most of us are patients or carers of pwME. Most of us support the notion that more research into ME/CFS is needed. Not there, but it was a different disease. There...

We've been subservient to a psychology culture since the early days of TV. That's only worsened by institutions like the NHS and NIH and CDC. I don't think I'm alone in saying I was raised to look at psychologists as the arbiters of reality. To look at disinterested researchers within the NIH...

My wife was born with Andersen-Tawil Syndrome, a potassium channelopathy. She has classic ATS1, and as such one muscle noticeably affected is her heart muscle. This can manifest in atypical Long QT, or cardiomyopathy or even heart failure. The thing is this: It's not immediately following...

By this logic we should also consider heat therapy, open-ended antibiotics, exercise, and prayer. Each of these has been anecdotally reported to help - and pretty much without the psych repercussions of ECT. Desperation is desperation, but it should not be the foundation of a therapy imo.

This is a step in the right direction, but I worry about the abstract/summary; many clinicians will jump to results and conclusions and only see I've taken five tests of this type over the last several years, and I've found them generally off-mark. They need to compare premorbid scores of...

I recall 15 years or so ago mentioning a similar phenomenon, but involving one of the tetracyclines' effect on MS, with one of my doctors. I seem to remembering him being dismissive and suggesting those MS patients probably were misdiagnosed. I didn't respond one way or the other, but I didn't...

Unknown Disease With Flu-like Symptoms Kills Almost 150 Sparking Pandemic Fears Replace "kills almost 150" with "permanently debilitates almost 150", and I suspect the rest of the headline would sink like a stone. This is the truth behind cultural aversion to chronicity.

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.