Search results

Or the devil in the details. Everything is a concept. Everything. It is baked into whatever idea you are trying to convey or discuss. Bringing attention to a medical term and then adding "concept" to it is not only redundant, it potentially brings attention to and then amplify the message that...

A few years back I tried to distinguish between my POTS and my OI, but I just go with the flow these days. I was tested for POTS day and night - about once an hour or so in the day at least - for four days. Abnormal HR and BP within 10 minutes of standing plus tachycardia. But I don't know if...

I am always better in the morning and I worsen as the day drags on. It's not due to sleep because my sleep always sucks. I've assumed, in part at least, that it relates to OI and POTS. I seem to recall a poll about morning vs evening and I thought it was here. Maybe not. But I do recall most...

The brainstem has been implicated many times in OI and ME/CFS and fibro and Gulfwar syndromes. I've had it suggested to me, for me, in two of those four, once after a 4-day stay at a well-regarded study for ME/CFS. The question for me is, what damages the brainstem and then maintains that...

Add to that the chronically ill who can still work, and a potentially large voting block could emerge. Many millions of sick people under a single banner. Larger than most unions.

For many clinicians Lyme Disease as a diagnosis is undermined - even undone - by the Lyme Disease concept. The latter is much broader and unwieldy and contemptuous of conventional medical doctrine. As for any clues we can make sense of in process terms, I'd only caution against reducing things...

Seems like a "diagnosis" to me. "Diagnosis" would be safer than a concept. Everything is a concept, and concepts carry unintended ambiguities when we've enough of those already..

Thank you very much. I hate to ask questions when everyone else gets it. I think this may be wrong on a couple of levels. I think you may be oversimplifying the ME/CFS experience. More worrisome to me personally is this again seems to suggest issues with perception e.g., we think we cannot do...

Thank you, and sure, but how does that relate to ME/CFS, and how do perception and artificial stories in our brain cells and faulty neural signaling fit? If I say "persistence" is at the root of ME/CFS, or a corrupted immune response, or an autoimmune issue - any of these could qualify as an...

I'm sorry, I find this "perception of voluntary action" reference combined with "our own bodies are narrated in artificial stories in our brain" - both in close proximity to ME/CFS - a little disconcerting. I'd greatly appreciate you explaining how this fits your ME/CFS understanding, preferably...

Oversimplifying what?

ME/CFS and LC are discussed along with Lyme, as well as PEM. https://www.lymedisease.org/complexities-long-haul/

That's fair, although I'd venture they're out there. The mind-over-disease thing doesn't seem to pervade Lymeworld like it does ME/CFS (at least not that I've seen). But because Lyme is purported to be caused by a bacteria, and persistent Lyme supposedly occurs in the face of failed antibiotics...

Maybe she's been told she has both. They are both diseases that boil down to belief systems. They are beliefs in a disease, whether held by the patient or the clinician. Usually neither diagnosis is concrete.

Would't peripheral sensitisation make ME/CFS an interoceptive disorder? Does this align with Baraniuk's theories at all, or was it informed by them? Baraniuk: "Our magnetic resonance imaging studies of exercise-induced changes in brain blood flow are a model for postexertional malaise/symptom...

I am thinking you're not suggesting this 'peripheral sensitisation' is a thing in and of itself - it doesn't just happen, we don't grow into it. It is downstream. Something brings it along, and something maintains it? If so, what? Or am I misunderstanding? I'm not clear that we know they are...

Yes, the relative unresponsiveness of muscles is part of it, as is the exhaustion. But so many of us have that "poisoned" sensation. That gets its volume twisted high. As does the acid feeling if you've that. As does the head pressure...etc. For some its different areas of pain. Point is, your...

Pacing isn't therapeutic, it's preventative. Our systems don't shut down. They scream bloody murder! PEM isn't a reflex learnt to avoid being burned, it's being burned and feeling that pain.

Like many others, I rarely am exposed because I cannot get out much. But I do get the rare fever on occasion. However, I'm not sure if it would clinically qualify as such since my baseline temp is relatively low (96.9 F vs 98.6F). So a fever might look like a non-event to any doctor or nurse. I...

I suspect that there are, at least in some pwME, multiple pathogens (viral, bacterial and/or parasites) simultaneously at play. It may be a crap shoot trying to figure which one, or which combination, cause symptom persistence since diagnostics can be wholly inadequate.