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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.

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...