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We have so many symptoms, but there is no standard intensity with which we all experience them. We are all unique in terms of how each symptom manifests. This is true in terms of duration and frequency and intensity. It's true for what triggers PEM, too. I think pretty much all pwME understand...

Some pwME have intellectual impairment. If anyone is going to characterize our disease, this fact in my opinion should be part of the characterization. What should not be part of the characterization is saying there is no intellectual impairment among pwME. That would simply be incorrect and...

People with ME share core diagnostic requirements. Things like unrefreshing sleep, PEM, OI, etc. They all have these factors to varying degrees. Same is true for things like balance or pain or exhaustion. Some people are in so much pain they can think of little else. Some people are so exhausted...

Merged conversation This smacks of opinion but it is framed as fact. Please remember this is a science forum.

FYI, purportedly there is acquired periodic paralysis. This is - as is the case with typical pp - supposedly temporary or intermitant. Not much, relatively speaking, is known about it because no money is thrown at it because it effects so few and, for the most part, we are a selfish and...

Alternatively, they could offer support for proximity playing a role in familial clustering of ME/CFS. I have not read the entire paper, and really don't want to revisit XMRV anyway....

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...