Search results

I used to think heart rate or blood pressure had something to do with PEM. It's easy to fit either into "physical" or emotional induced PEM. It's not as easy when purely cognitive PEM is on the table. But I think I can differentiate cognition when laying flat vs cognition when sitting up. I read...

I would be careful here. Making sweeping generalizations is seldom wise, but where it concerns pwME, it is even less so.

There was a school of thought out of Australia that suggested ME/CFS was in at least some cases a channelopathy, or involved a channelopathy. I am struggling so excuse this layperson's attempt to describe: Channelopathies refer to ion channels in muscle cells that fail to one degree or another...

Brings to mind channelopathies and periodic paralysis variants.

How would that relate to the brain? Do we trust this? It's hard when you read something sometimes..

If I could triage my physical rehabilitation, I'd start with my brain. Unfortunately, I am not optimistic all the brain problems will resolve with whatever treatment. I fear for some pwME, there may be permanent damage, and cognitive problems might remain, even if the lion's share of symptoms...

I wonder why facial paralysis wouldn't be considered a biomarker. In some infections, rashes would be in and of themselves.

Idiopathic? I thought Bell's palsy was tied into a handful of viruses and bacteria, e.g. herpes variants and borrelia.

Please tell me you're not referencing the more or less contemporary of Spinoza and Kant? The guy I studied half a century ago for his philosophical import? That this is not a philosophy reference? :) In advance of what I am surely confused by name similarities, I apologize.

It might be helpful to have insight from an infectious disease expert.

I've had five of these tests since I got sick. That doesn't even include the MOCHA. It took ten years of being in cognitive decline before anyone asked one for me. Not once did anyone who administer the evaluations ask what my premorbid scores, i.e. IQ, were. All my results were treated as...

Shouldn't forget that most of these tests are not designed for our brand of cognitive decline. More importantly, when taking these tests, patients are warned (threatened?) to work as hard as possible, to maximize effort, almost to the point of admonishment. Adrenaline pumps in, forced attention...

Agreed, they could be. What leans me toward a different possibility is what to some seems like deliberate mischarcterizations that have been haunting diseases such as ME for half a century - and obviously not just from the BPS crowd. But clearly you have a point. Nod. Understood. I spent my...

You'd find quite a lot in the US. Sometimes. Sometimes not. Actually, frequently not. And yet I have, again perhaps due to proximity, perhaps due to length of time living it. Clearly there can be overt differences outside of the defining characteristics, and even these can vary. And quite...

The tandem could matter. The combination could. Eh, I'm just musing. Some like me believe it may some day lead to accountability. But revealing the problem, shining a light on the mechanisms, easily takes precedence.

Right. But maybe knowing could help? I mean, I agree, unraveling the mechanism is the grail. Still, wouldn't you want to know? What if it's a tandem? Somewhere along discovery, there may be import to knowing which microbes that extends beyond the pragmatic.

But we do see notable differences. Swollen lymph nodes, cognitive vs physical PEM, sore throats vs nada, swollen joints vs painful joints with no swelling....You get the idea. Perhaps these relatively minor differences boil down to different agents - assuming the major qualifying ME...

I'm not sure I follow this. ME/CFS appears in different forms. Couldn't that fact be due to discrete bugs? There are ME/CFS schools of thought where there can be multiple agents/triggers. Perhaps pretty much any agent can set things into motion, but it's old entrenched latent viruses that...

I would have thought so. I sort of still do. Then again, neurologists are in charge of channelopathies - God knows why - and you can't find half of a baker's dozen who know anything about anything when it comes to channelopathies. To take it a bit further, if persistence is a factor, don't...

I am excited for the diagnostic import of these findings. They would validate us. Just as happened with some channelopathies when genetic links were established (treatment still lags here, but the patient empowerment has been paradigm-changing). I, too, however, wonder about the implications...