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I too was concerned. I not only remembered my premorbid IQ scores, I ordered a copy from my old high school as a guardrail against my increasingly suspect memory. Over a span of 5 or so years, I had four new IQ tests. Turns out my concern was warranted; my IQ had dropped 15 to 20 points. I...

I have POTS - tachycardia and rising BP within 10 minutes etc. But I think my most unpleasant OI symptom is loss of balance. This also translates into gait issues. It feels like I'm about to tilt over so much I may fall, but I seldom do. I try to lean against things when ever I can when I walk...

In theory only. And when it comes to medicine, pretty much for the idealogues only. In reality, particularly when you stray into contested disease territory, science can have little to do with getting the right answer. I know you know this. It may just as easily blur into the background with the...

Ok, but I'm still unclear of what you're trying to say. I get that you need eyeballs to see, and neurons, etc, but it's still redundant to say the perception of seeing. And why assume there is an error in the perception process? If you assume that because, say, we can't find any overt structural...

I'm unclear what the difference would be between fatigue and pain, and the perception of fatigue and pain, but the potential genetic role is intriguing. Of course, with ME/CFS it only seems appropriate that we wouldn't be able to demonstrate that role conclusively.

At least partially undone by at least one unfortunate thing re: making sweeping declarations about infections like chronic Lyme, if @Utsikt's report is accurate. I am always wary of ME/CFS allies who seem to fumble an understanding of similarly contested diseases. Of course, we need all the...

The millions who have evidence they have one or the other will be relieved to hear this.

Interesting study that explores RYR1 gene variations and their import to things like muscle weakness and ATP and mitochondrial function, and how these change with age in healthy individuals vs those with channelopathies. RYR1 variations have been tied into ME/CFS before. This study parses down...

I generally look at these gene explanations as a form of victim blaming. Regardless, there is no need for HLA to explain persistence, at least as far as Lyme is concerned. But who knows? Well, perhaps the relentless group of mainstream spirochete sleuths that have viewed HLA as the holy grail...

So is taking in more salt, and I'm equally skeptical of its success as a treatment. Not sure what this has to do with POTS.

Over significant fields of time? Does infection duration factor in? Is the IgG vs IgM consideration a thing with infections that persist? Is this not a gene thing as much as it is a function of chronicity? As an example: syphilis.

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...