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Imo, this is a very dangerous declaration. I would suggest the eyes of most of the people who need persuading are of the political sort. Doctors typically trail behind, except for the few trailblazers that first have to endure cross burning..

Agreed. Yet I have to worry about stepping on a doctor's or nurse's toes most times I try to correct a misguided notion. You may not understand it, but neither did I the many times when I naively first tried to enlighten a professional. It's just a reality. We can parse down on symptom...

I cannot speak for most pwME, of course, but I use terms like brain fog because I know most doctors would not understand if I went into specifics, or would misconstrue. It is the medical profession's inability to stay abreast of the patient experience, or indifference to doing so, that I think...

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.